Cancer Nursing : Care in Context [2 ed.] 9781444309256, 9781405122535

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Cancer Nursing: Care in Context

Also of Interest: Evidence-Based Palliative Care HH Abu-Saad 978-0-6320-5818-1 Cancer Care for Adolescents and Young Adults Edited by Daniel Kelly and Faith Gibson 978-1-4051-3094-3 Cancer in Children and Young People (John Wiley and Sons) Faith Gibson and Louise Soames 978-0-4700-5867-1 An Introduction to Cancer Care (John Wiley and Sons) Tracey McCready 978-1-8615-6460-3

Cancer Nursing: Care in Context Second Edition Edited by

Jessica Corner Director for Improving Cancer Services Macmillan Cancer Support and Professor of Cancer and Palliative Care School of Nursing and Midwifery University of Southampton Southampton UK and

Christopher Bailey Senior Research Fellow School of Nursing and Midwifery University of Southampton Southampton UK

© 2008 by Blackwell Publishing Limited Blackwell Publishing editorial offices: Blackwell Publishing Ltd, 9600 Garsington Road, Oxford OX4 2DQ, UK Tel: +44 (0)1865 776868 Blackwell Publishing Inc., 350 Main Street, Malden, MA 02148-5020, USA Tel: +1 781 388 8250 Blackwell Publishing Asia Pty Ltd, 550 Swanston Street, Carlton, Victoria 3053, Australia Tel: +61 (0)3 8359 1011 The right of the Authors to be identified as the Authors of this Work has been asserted in accordance with the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, except as permitted by the UK Copyright, Designs and Patents Act 1988, without the prior permission of the publisher. Designations used by companies to distinguish their products are often claimed as trademarks. All brand names and product names used in this book are trade names, service marks, trademarks or registered trademarks of their respective owners. The Publisher is not associated with any product or vendor mentioned in this book. This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold on the understanding that the Publisher is not engaged in rendering professional services. If professional advice or other expert assistance is required, the services of a competent professional should be sought. First published 2008 by Blackwell Publishing Ltd ISBN-13: 978-1-4051-2253-5 Library of Congress Cataloging-in-Publication Data Cancer nursing : care in context / edited by Jessica Corner and Christopher Bailey. – 2nd ed. p. ; cm. Includes bibliographical references and index. ISBN-13: 978-1-4051-2253-5 (pbk. : alk. paper) ISBN-10: 1-4051-2253-6 (pbk. : alk. paper) 1. Cancer–Nursing. I. Corner, Jessica. II. Bailey, Christopher. [DNLM: 1. Oncologic Nursing–methods. 2. Neoplasms–nursing. WY 156 C2194 2008] RC266.C355 2008 616.99′40231–dc22 2007025830 A catalogue record for this title is available from the British Library Set in 11/12pt Adobe Garamond by SNP Best-set Typesetter Ltd., Hong Kong Printed and bound in Singapore by C.O.S. Printers Pte Ltd The publisher’s policy is to use permanent paper from mills that operate a sustainable forestry policy, and which has been manufactured from pulp processed using acid-free and elementary chlorine-free practices. Furthermore, the publisher ensures that the text paper and cover board used have met acceptable environmental accreditation standards. For further information on Blackwell Publishing, visit our website: www.blackwellpublishing.com

Contents

List of contributors Foreword Preface

Part 1: Cancer, Care, and Society 1 2 3 4 5

What is cancer? Jessica Corner Knowledge and caring: a philosophical and personal perspective Alan Cribb Cancer, care, and society Christopher Bailey Cancer epidemiology Elizabeth Davies and Vivian Mak Developments in the management of cancer Alastair Munro

Part 2: The Experience of Cancer 6 7 8 9

Introduction The impact of cancer Mary Wells The impact of cancer on the family Hilary Plant The impact of cancer on health care professionals Anne Lanceley Therapeutic strategies in cancer care Anne Lanceley

Part 3: The Experience of Treatment 10 11 12 13 14 15 16

Introduction The experience of treatment Lynne Colbourne Surgery Stephen O’Connor Chemotherapy Lisa Dougherty and Christopher Bailey Radiotherapy Sara Faithfull Endocrine therapies Deborah Fenlon Complementary and alternative therapies in cancer care Caroline Hoffman Hereditary cancer Audrey Ardern-Jones, Sarah Thomas, Rebecca Doherty and Rosalind Eeles

vii x xi

1 3 13 28 51 67

107 108 109 136 153 172

193 194 197 218 267 317 360 394 427

vi Contents

Part 4: The Management of Cancer-related Problems 17 18 19 20 21 22 23 24 25 26 27 28 29

Introduction Pain Meinir Krishnasamy Nausea and vomiting Meinir Krishnasamy Fatigue Meinir Krishnasamy Breathlessness Christopher Bailey Wound management Meinir Krishnasamy Lymphoedema Anne Williams Malignant ascites Nancy Preston Bone marrow suppression: neutropenia and thrombocytopenia Ruth Dunleavey Change in eating habits Jane Hopkinson Sexuality and cancer Isabel White Anxiety and depression Annabel Pollard and Meinir Krishnasamy Delirium Meinir Krishnasamy Acute events in cancer Stephen O’Connor

Part 5: Needs and Priorities in Cancer Care 30 31 32 33 34 35 36 37

445 446 449 462 469 478 488 496 504 509 525 533 543 551 558

573

Introduction The needs of children and adolescents Fay Scullion and Jenny Thompson The needs of older people Christopher Bailey Ethnicity, difference, and care Yasmin Gunaratnam Living with cancer long term: the implications of survival David Wright Self-management and self-help Claire Foster User involvement in cancer services David Wright and Jenny Walton Palliative care and cancer Sheila Payne Research and cancer care Jessica Corner

574 577 610 620 638 651 659 672 691

Index

711

Contributors

Audrey Ardern-Jones Senior Clinical Nurse Specialist in Cancer Genetics Genetics Department The Royal Marsden NHS Foundation Trust Sutton, Surrey Christopher Bailey Senior Research Fellow School of Nursing and Midwifery University of Southampton Southampton Lynne Colbourne Advanced Nurse Practitioner Gloucestershire Hospitals NHS Foundation Trust Cheltenham General Hospital Cheltenham, Gloucestershire Jessica Corner Director for Improving Cancer Services Macmillan Cancer Support and Professor of Cancer and Palliative Care School of Nursing and Midwifery University of Southampton Southampton Alan Cribb Professor of Bioethics and Education Centre for Public Policy Research King’s College London London

Elizabeth Davies Senior Lecturer in Cancer Registration King’s College London London Rebecca Doherty Genetic Counsellor The Royal Marsden NHS Foundation Trust Sutton, Surrey Lisa Dougherty Clinical Nurse Specialist Royal Marsden Hospital London Ruth Dunleavey Clinical Nurse Specialist St Vincent’s Hospital New South Wales Sydney, Australia Rosalind Eeles Reader in Clinical Cancer Genetics, Honorary Consultant in Cancer Genetics and Clinical Oncology Team Leader, Translational Cancer Genetics Team Institute of Cancer Research and Head of Cancer Genetics Unit Royal Marsden NHS Foundation Trust Sutton, Surrey

viii

List of contributors

Sara Faithfull Director of Studies: Doctorate of Clinical Practice Division of Health and Social Care Faculty of Health and Medical Sciences University of Surrey Guildford, Surrey

Alastair Munro Professor of Radiation Oncology Department of Surgery and Molecular Oncology Ninewells Hospital and Medical School Dundee, Scotland

Deborah Fenlon Senior Research Fellow School of Nursing and Midwifery University of Southampton Southampton

Stephen O’Connor Senior Lecturer in Cancer and Palliative Care School of Continuing and Advanced Practice Faculty of Society and Health Buckinghamshire New University Buckinghamshire

Claire Foster Reader and Head of Macmillan Research Unit Macmillan Research Unit University of Southampton Southampton Yasmin Gunaratnam Senior Research Fellow University of Central Lancashire Preston, Lancashire Caroline Hoffman Clinical Director and Research Co-ordinator Breast Cancer Haven London Jane Hopkinson Macmillan Senior Research Fellow Macmillan Research Unit University of Southampton Southampton Meinir Krishnasamy Clinician-Researcher, Nursing Supportive Care Research Group The Peter MacCallum Cancer Centre Melbourne Victoria, Australia

Sheila Payne Help the Hospices Chair in Hospice Studies University of Lancaster Lancaster Hilary Plant Visiting Research Fellow Florence Nightingale School of Nursing and Midwifery London Annabel Pollard Director, Clinical Psychology Services The Peter MacCallum Cancer Centre Melbourne Victoria, Australia Nancy Preston Independent Researcher Preston, Lancashire Fay Scullion Senior Macmillan Development Manager Macmillan Cancer Support York

Anne Lanceley Clinical Research Fellow UCL EGA Institute for Women’s Health Gynaecological Cancer Research Centre University College London London

Sarah Thomas Clinical Nurse Specialist in Cancer Genetics Genetics Department The Royal Marsden NHS Foundation Trust Sutton, Surrey

Vivian Mak Information Analyst King’s College London London

Jenny Thompson Freelance Lecturer and Writer Moorbank Farmhouse Crowhurst, Sussex

List of contributors ix

Jenny Walton Macmillan Cancer Voices Trainer Patient Representative Humber and Yorkshire Coast Cancer Network

Anne Williams Cancer Nursing Research Fellow/Specialist Lymphoedema Nurse Napier University/NHS Lothian Edinburgh, Scotland

Mary Wells Lecturer and Clinical Research Fellow in Cancer Nursing School of Nursing and Midwifery University of Dundee Dundee, Scotland

David Wright Macmillan Senior Research Fellow Macmillan Research Unit University of Southampton Southampton

Isabel White Cancer Research UK Nursing Research Training Fellow European Institute of Health and Medical Sciences (EIHMS) University of Surrey Guildford, Surrey

Foreword

Major advances have been made on cancer over the past 30 years, with important developments in basic science, diagnostics, treatment, care of individuals affected by cancer and in organisation of cancer services. When I qualified as a doctor in 1977 CT scanning was in its infancy and neither MRI nor PET scanning were on the horizon; early scientific work to understand cell signalling pathways was underway, but the introduction of therapies targeted against these pathways was still a dream; the diagnosis of cancer was often not discussed with the patient and multidisciplinary team working was the exception not the rule. Amongst the most important developments during my working life have been those related to cancer nursing. Nurse specialist roles have evolved for palliative care, chemotherapy, breast cancer and more recently for other cancers. Nurse consultant and nurse practitioner roles have been introduced in areas such as endoscopy and breast assessment. Nurses are now recognised as integral members of every multidisciplinary cancer team. The increasing complexity of cancer management has led to developments of the roles of nurses working on hospital wards, in outpatient settings and in the community. However, there is still much to be done to achieve our goal of delivering optional care. We know that there are still many deficiencies in the

care we provide in this country. The needs of those affected by cancer for information, good face-to-face communication and well coordinated care are still not always recognised or met. Patients may need support throughout their care pathway, but we know they can sometimes feel abandoned after the completion of primary treatment. In order to deliver optimal care cancer nurses need access to information and education for themselves about all aspects of cancer, but especially about the multiplicity of roles that a cancer nurse may currently fulfil. These roles include assessment of an individual’s needs, communication, coordination of care, education of patients and families, delivery of treatment and provision of comfort. This second edition of Cancer Nursing: Care in Context provides an invaluable resource for aspiring and existing cancer nurses and for those who work alongside them in the delivery of multidisciplinary care. Jessica Corner and Chris Bailey have brought together a powerful team with availability to write eloquently and passionately about their areas of expertise. The authors have drawn on their direct experience to make this a most informative and readable text book. Professor Mike Richards National Cancer Director

Preface

This book is something of a departure from the standard textbook. Most are a source of knowledge about a particular disease, treatments, and health care practices. The function of a textbook is to compile in a single volume the ‘state of the art’ and the latest research evidence; to create a source of reference for knowledge, offering a kind of ‘truth’ in relation to what is known about, and what might constitute best practice in a given area. There are many such texts on cancer, cancer treatment, and cancer nursing on library and bookshop shelves. This book is not intended to replace these excellent texts; rather, the intention is to offer a different perspective. An attempt is made here to reveal cancer as an experience that is socially and culturally determined in unique and powerful ways. It is acknowledged that there are many discourses or knowledge systems that surround cancer; indeed, several contrasting discourses may be found within the pages of this book. At times these are made manifest by the author; elsewhere the text is less self-conscious in this respect and adheres to a particular tradition or language. In general, however, it is acknowledged that cancer discourses dictate society’s, individual, and collective responses to the disease and to the people who have it, and it is these that in turn shape our understanding of cancer. To work effectively with cancer, nurses need to understand their reactions to the disease, and the reactions of others. Nurses need to move between biomedical and lay understanding of cancer and

how it is treated, and to be aware of the failings of professional carers and health care in supporting people who have cancer. Complex dynamics within society, and within professional and organisational contexts, determine how cancer is managed and understood. Knowing that such processes are at large, and how these may affect one’s own response to someone who is ill, or how treatment and care for a particular condition is constructed, is, we believe, the basis for caring. This book therefore offers a critical exploration of the forces that shape the delivery of cancer care, and this is given priority over the need to assimilate biomedical knowledge about cancer and its treatment. Access to the latter is offered throughout the book, and is set alongside a critical exploration of cancer care, personal accounts by people who have cancer, and reviews of research into care and treatment. The stance taken is that change needs to happen so that the many and complex needs of people with cancer and their families are met more completely than at present; nurses have much to offer here, and may themselves be powerful agents of change. Perhaps this book takes a small step towards empowering nurses to develop alternatives for people with cancer, offering choices over how cancer is understood, and promoting the role of nursing in managing the day-to-day experience of cancer and its treatment. Contributions to the book are from different perspectives and there is no claim that they speak

xii

Preface

with a single voice; it is a collection of differing but convergent viewpoints. A number of recurring themes draws the accounts together. The text as a whole takes a critical standpoint; all is not right with how cancer care is currently managed, therefore questions are raised about existing practice and whether this serves the interests of those who require care. Through the themes selected, discussion takes one beyond established orthodoxy, though the perspective of caring and the contribution of nursing are central. At the outset, it was decided that this book should help nurses to access experiences of what it is like to have cancer, to receive treatment for cancer, or to care for someone who has cancer, since these are life changing and life defining. Unless one is able to think about what it must be like to experience cancer, it is not possible to understand what is needed. This has been achieved through the use of personal accounts derived from a variety of sources. Through the accounts the book adheres to a belief that in caring it is essential that nurses draw on the personal narratives, or stories, of people who are sick. In using personal accounts the book offers the reader knowledge through experience, albeit somewhat vicariously. The personal accounts, and indeed parts of the text itself, could be used as a focus for discussion or guided reflection; this is, we believe, the foundation for developing and changing practice. The book does not represent a single or final version of knowledge in cancer care; throughout, core texts, seminal works, and research studies are introduced so that readers can access and read these for themselves. The book therefore could be seen as a springboard from which the reader may begin his or her own journey of caring and scholarship in this intensely challenging area of health care. For this second edition of the textbook we have retained many of the chapters from the first edition and updated them. We have also reflected the stronger voice and involvement of people with

cancer as users of cancer services, and the opportunities that now exist for partnership working with professionals in shaping cancer services, research, and practice. Also, since publishing the first edition data have become available evidencing that longer survival is being achieved for key disease sites. The needs of increasing numbers of people who will live with cancer as part of their lives are addressed as are strategies needed to manage the effects of cancer beyond the treatment phase of illness. The book has been organised into five parts. In the first, entitled Cancer, Care, and Society, cancer is set in context and the notion of cancer discourses and the responses of society, health care, and health carers are introduced and explained, as are some suggestions for escaping the defensive dynamics engendered by these. This discussion is set alongside the science of cancer epidemiology and a discussion about developments in cancer management. Part 2 deals with the experience of cancer from the perspectives of the person who is ill, family members, and health professionals. This is developed in Part 3, which offers detailed insight into the experience of cancer treatment, and the role of nurses in administering treatment and helping people with cancer to manage the effects of treatment. Part 4 explores the nursing management of problems related to cancer, redefining the more biomedically driven term ‘symptom’ as ‘problem’, and placing nursing in a central position in helping people to manage problems. Finally, Part 5 identifies and reviews a number of needs and priorities in cancer care, including perspectives on the needs of particular groups such as children and adolescents, the elderly, and working with ethnicity and difference. The themes of living with cancer long term, self-management and self-care, palliative care, and research in cancer care are also addressed. Jessica Corner Christopher Bailey

Part 1

Cancer, Care, and Society

CHAPTER ONE

What is cancer? Jessica Corner

‘Cancer’ is the term used to denote a group of diseases sharing common characteristics, represented by each site of the body from which these arise. Many are quite different in nature, rate of progression, sequelae, treatment and outcome. While important progress has been made in the management of cancer, and palliation of symptoms and survival rates for cancer are improving for a number of cancer sites, cancer remains the cause of a quarter of all deaths in Europe.1 Worldwide, 12% of people die from cancer, more than twice the number who die from AIDS, and in resource-rich countries one in four people die of the disease.2 The effects of the disease process, the protracted nature of treatment, and the psychological impact of cancer mean that the implications for the individual reach beyond many other acute and chronic conditions. As Donovan and Girton highlight:3 The magnitude of the problem of cancer in our society is only partially reflected by statistics on mortality and morbidity. These figures do not tell of the panic inherent in the mere thought of cancer, the role changes and conflicts that may arise when cancer is treated, or the dozens of other problems encountered by the person who faces a diagnosis of cancer. Since cancer is frequently a chronic disease with periods of acute intensive illness interspersed with the constant threat of death, the patient with a diagnosis of cancer must face the problems of each of these kinds of illnesses.

In being used to describe disease, cancer serves only as an umbrella term to draw together a large

group of diseases (more than 100) with certain characteristics, rather in the way the term ‘arthritis’ is used. The difficulty with the term ‘cancer’ is that it is loaded with meanings for people, and these are inevitably negative. Understanding ‘what cancer is’ is therefore complex. One way of understanding cancer is to explore how it is manifested within the population. The science of disease within populations – epidemiology – is discussed by Elizabeth Davies and Vivian Mak later in this section. Cancer is a common condition: one in three people will develop cancer at some point in their lives. More than 270 000 people in the UK develop cancer each year. Although cancer can develop at any age, most people with cancer are over 65 years old.1 At least 7.5 million new cancers are diagnosed each year in the world; cancer thus represents a huge burden of disease.1 In the UK, four cancers account for over half of all cases: these are lung, breast, colorectal and prostate cancers. Figure 1.1 shows the 20 most common cancers in men and women in the UK, and Figure 1.2 shows a comparison between common cancers for developed and developing countries of the world, since these are different and reflect environmental factors contributing to cancer. Liver cancer is common in developing countries, where it is related to hepatitis B virus and food contaminated with aphlatoxin. In contrast, breast cancer is most common in developed countries.2 Figure 1.3 shows the most common cancers in men and women. These are somewhat different,

4 Cancer, care, and society Breast Lung Large Bowel Prostate Bladder NHL Stomach Malignant Oesophagus Pancreas Leukaemia Ovary Kidney Body of uterus Oral Brain and CNS Multiple myeloma Cervix Liver Larynx Other

Males

0

10,000

20,000

Females

30,000

40,000

50,000

Number of new cases

Figure 1.1 The 20 most commonly diagnosed cancers (excluding non-melanoma skin cancer) in the UK, 2003. NHL, non-Hodgkin’s lymphoma; CNS central nervous system. Reproduced with permission from Cancer Research UK (2004). Cancerstats Monograph. London: Cancer Research UK.1

Male Lung

470,836

Stomach Prostate Colorectal

Female 430,919 350,176

208,282

180,059

318,694

Liver

325,108

73,270

Oesophagus

224,071

54,910

Bladder

96,118

163,648

Oral cavity

109,553

59,959

NHL

Corpus uteri

113

85,912

NHL Leukaemia

66,186

Brain etc

More developed

500

63,934

41,034

59,416

250

0

250 500 Number (thousands)

54

47

65

61

39

24

Thyroid Bladder

132 117

66

Oral cavity

Less developed

75 16

Pancreas

49,520

36,972

101

33

Liver

79,927

Pancreas

192

91

58,416

39,158

161

125

Ovary

62,196

Other pharynx

154 175

Stomach

Larynx

79,090

379

291

Lung

Leukaemia Kidney

91

Cervix uteri

Oesophagus

86,436

80,181

471

579

Colorectal

127,419

415,568

Breast

More developed

500

250

72

35

53

48

27 0

Less developed

250 500 Number (thousands)

Figure 1.2 Comparison of the most common cancers in more and less developed countries in 2000. NHL, nonHodgkin’s lymphoma. Reproduced with permission from Stewart B. and Leihues P. (eds.) (2003). World Cancer Report. Lyons: International Agency for Research on Cancer.2

What is cancer? 5 The ten most common cancers diagnosed, males, UK, 2000

Other 21% (28,420)

Prostate 20% (27,149)

Kidney 3% (3,831) Leukaemia 3% (3,906) Oesophagus 3% (4,485)

Lung 17% (23,245)

Non-Hodgkin’s Iymphoma 4% (4,812) Head and neck 4% (5,504) Stomach 5% (6,088) Bladder 6% (7,876)

Large bowel 14% (18,956) * excluding non-melanoma skin cancer

All malignant neoplasms* – 134,272

The ten most common cancers diagnosed, females, UK, 2000

Breast 30% (40,467) Other 24% (32,703)

Bladder 2% (3,205) Stomach 3% (3,572) Pancreas 3% (3,645) Melanoma 3% (3,939) Non-Hodgkin’s Iymphoma 3% (4,377) Uterus 4% (6,002) Ovary 5% (6,734)

Large bowel 12% (16,344)

Lung 11% (15,165)

All malignant neoplasms* – 136,153

* excluding non-melanoma skin cancer

Figure 1.3 The most common cancers in men and women. Reproduced with permission from Cancer Research UK (2004). Cancerstats Monograph. London: Cancer Research UK.1

with lung cancer the most common for men, and breast cancer for women. Figure 1.4 shows the relative percentage of people who survive 5 years after diagnosis; this is an indicator of the chance of being cured of any particular cancer. Some

cancers, such as skin cancer, if melanoma is excluded, have a very high chance of cure, whereas others, such as cancer of the lung and pancreas, have very low 5-year survival rates. The stage of the disease at diagnosis is an important

Women

Men

6 Cancer, care, and society Testis Melanoma Prostate Bladder Larynx Colon Rectum NHL Kidney Leukaemia Multiple myeloma Stomach Brain Oesophagus Lung Pancreas Melanoma Breast Uterus Cervix Bladder NHL Rectum Colon Kidney Ovary Leukaemia Multiple myeloma Brain Stomach Oesophagus Lung Pancreas

96% 77%

More than 50% survival:

65% 64% 62% 47% 47% 47% 45%

10–50% survival: 32% of cases

36% 23% 13% 12% 7% 6% 2%

Less than 10% survival: 87% 77% 73% 61% 54% 52% 51% 48% 46% 36% 35%

More than 50% survival:

10–50% survival: 22% of cases

23% 15% 14% 8% 6% 2%

Less than 10% survival: Five-year relative survival

Figure 1.4 The relative percentage of people who survive 5 years after diagnosis. Reproduced with permission from Cancer Research UK (2004). Cancerstats Monograph. London: Cancer Research UK.1

determinant of survival. Survival for cancers detected and treated early is invariably better.1 In the UK in 2002 there were 151 000 cancer deaths: lung cancer accounted for 22% of these and is the most common cause of cancer death; breast cancer accounted for 8% and is the leading cause of cancer death in women. In developed countries cancer is the cause of one in four deaths.2 The lifetime risk of developing cancer of different sites is shown in Table 1.1. Survival from cancer is also related to socio-economic status, with people who are from more deprived socio-economic circumstances having both higher cancer incidences and

poorer survival chances, reflecting both exposure to risk factors, behaviour and access to health care.4 Interestingly, cancer is unusual among diseases, in that in professional discussion in oncology, ‘survival’ is used as a benchmark for measuring outcome and the effectiveness of treatment. Outcomes are discussed in terms of an individual’s chances of survival, measured formally as relative 5-year survival rates. Treatment choices are made on the basis of assessment of an individual’s survival chance offset against attendant levels of toxicity for any given course of treatment.

What is cancer? 7 Table 1.1 Estimates of the percentage out of a cohort who developed cancer by the age of 65 years, and over a lifetime, England and Wales, 1997. Reproduced with permission from Cancer Research UK (2004). Cancerstats Monograph. London: Cancer Research UK.1 Males % of cohort who develop cancer:

Bladder Brain and CNS Breast Cervix Kidney Large bowel Leukaemia Lung Melanoma Multiple myeloma Non-Hodgkin lymphoma Oesophagus Ovary Pancreas Prostate Stomach Uterus

Females % of cohort who develop cancer:

by age 65

over lifetime

Lifetime risk

by age 65

over lifetime

Lifetime risk

0.7 0.4 – – 0.4 1.4 0.4 1.7 0.4 0.1 0.6 0.4 – 0.3 0.9 0.5 –

3.3 0.7 – – 1.1 5.7 1.0 8.0 0.7 0.6 1.4 1.3 – 1.0 7.3 2.3 –

1 1 – – 1 1 1 1 1 1 1 1 – 1 1 1 –

0.2 0.3 5.6 0.6 0.2 1.1 0.3 1.0 0.5 0.1 0.4 0.2 0.9 0.2 – 0.2 0.6

1.3 0.5 10.9 0.9 0.6 4.9 0.8 4.3 0.9 0.5 1.2 1.1 2.1 1.1 – 1.2 1.4

1 1 1 1 1 1 1 1 1 1 1 1 1 1 – 1 1

in 30 in 147

in in in in in in in in

89 18 95 13 147 177 69 75

in 96 in 14 in 44

in in in in in in in in in in in in in in

79 207 9 116 162 20 127 23 117 204 83 95 48 95

in 86 in 73

The possibility of death is immediate, and avoiding this as a goal predominates, reinforcing and responding to social and cultural images of cancer. Biological understanding of cancer has become much more detailed in recent years, owing to discoveries in molecular biology and genetics. These discoveries in turn suggest new avenues by which treatment may be targeted at specific points in the natural history of cells in which cancer may originate. Weinberg eloquently describes the defining features of cancer at a cellular level:5

by other cells in their vicinity. Such unceasing collaboration ensures that each tissue maintains a size and architecture appropriate to the body’s needs. Cancer cells, in stark contrast, violate this scheme; they become deaf to the usual controls on proliferation and follow their own internal agenda for reproduction. They also possess an even more insidious property – the ability to migrate from the site where they began, invading nearby tissues and forming masses at distant sites in the body. Tumours composed of such malignant cells become more aggressive over time, and they become lethal when they disrupt the tissues and organs needed for the survival of the body as a whole [p.3].

Almost every tissue in the body can spawn malignancies; some even yield several types. What is more each cancer has unique features . . . the basic processes that produce these diverse tumours appear to be quite similar . . . 30 trillion cells of the normal, healthy body live in a complex, interdependent condominium, regulating one another’s proliferation. Indeed, normal cells reproduce only when instructed to do so

This description immediately transports us into a world deep inside the body, to a kind of internal city of citizen cells. Cancer is the sinister anarchistic force that threatens this internal society, and signals its ultimate demise; pictured in this way, fear of cancer and feeling the need to fight cancer seem natural responses.

8 Cancer, care, and society

A closer look at this deep internal world reveals a far less sinister sequence of mechanical or system failures, which, when they occur together, lead to the formation of a cancer. The aim of cancer science is to understand fully these mechanisms and eventually to find ways of correcting the mechanical failure, or to counteract the deleterious effects of it. The steps in the biological development of cancer outlined by Weinberg are shown in Figure 1.5.5 There is a number of mechanisms that either alone or in combination causes abnormalities in cell growth and multiplication. For a cancer to develop, it probably requires several to occur together. Hanahan and Weinberg state that tumorigenesis is a multistep process whereby human cells are progressively transformed into highly malignant derivatives.6 They suggest that ‘tumour development proceeds via a process analagous to Darwinian evolution, in which a succession of genetic changes, each conferring one or another type of growth advantage, leads to the progressive conversion of normal cells into cancer cells’ (p.57). They characterise these genetic changes as six alterations in cell physiology that collectively dictate maligant growth as follows: 1. the development of self-sufficiency in growth signals – in normal cells stimulatory signals that bind receptors on the cell membrane trigger the cell to move from a quiescent state into an active proliferative state in order for cell division to take place. Normal cells cannot multiply without such external stimulator signals. Tumour cells, on the other hand, generate their own internal growth signals and therefore are much less dependent on stimulation from the normal tissue environment; they acquire ‘growth signal autonomy’ 2. acquired insensitiviy to antigrowth signals – in normal tissue multiple antiproliferative signals operate to maintain cellular quiesence and tissue homeostasis. In cancer cells genetic changes render cells insensitive to antigrowth factors. Alterations, or mutations, in genes within human cells contribute to abnormalities in cell growth. The mutations occur through errors in the replication of deoxyribonucleic

acid (DNA) during cell division and may occur after exposure to a carcinogen. Mutations that activate the normal functions of the cell are called proto-oncogenes.7 Tumour suppressor genes inactivate cell proliferation and if they fail to do this, cell growth may continue when it is no longer needed 3. evading apoptosis – the ability of tumour cell populations to expand in number is determined not only by the rate of cell proliferation but also by the rate of cell attrition. Acquired resistance towards programmed cell death or apoptosis is a hallmark of most types of cancer. The cell cycle is the name given to the process of cell division and is likened to a kind of clock that is set to a particular speed and rhythm.5 The cell cycle proceeds in a series of phases; this results in the cell’s DNA being replicated and the cell, and its DNA, dividing and becoming two daughter cells. Initially, the cell increases in size and prepares to copy its DNA ready for cell division. Then the chromosomes are replicated and the cell prepares to divide. Finally mitosis, or cell division, occurs. The cell then rests until it prepares to divide again. This cycle is controlled within the cell by cyclins and cyclin-dependent kinases or enzymes.7 Normally mechanisms of control prevent cells within the body continuing to divide and proliferate unless this is required. Tumour suppressor proteins within the cell can either block the activity of these cell cyclins, and therefore cause the cell cycle, and cell division, to pause; or, if excessive amounts of cyclins are produced by the cell, then cell division may proceed unchecked.8 Further cellular mechanisms exist to prevent uncontrolled cell division, for example, a process known as apoptosis. This is a mechanism whereby an abnormality in the cell’s DNA is recognised within the cell and its own death is brought about as a consequence. The p53 protein is involved in apoptosis; disruptions in the gene involved in the production of p53 may mean that abnormal cells can avoid apoptosis. Cancer cells may also produce proteins that prevent apoptosis. If apoptosis is avoided then an abnormal cell will continue to divide and replicate itself, perhaps indefinitely5

5 Invasive cancer 4 In situ cancer

1 Genetically altered cell 2 Hyperplasia

3 Dysplasia

Blood vessel

1 Tumour development begins when some cell ( ) within a normal population ( ) sustains a genetic mutation that increases its propensity to proliferate when it would normally rest.

2 The altered cell and its descendants continue to look normal, but they reproduce too much – a condition termed hyperplasia. After years, one in a million of these cells ( ) suffers another mutation that further loosens control on cell growth.

4 The affected cells become still more abnormal in growth and appearance. If the tumour has not yet broken through any boundaries between tissues, it is called in situ cancer. This tumour may remain contained indefinitely; however, some cells may eventually acquire additional mutations ( ).

3 In addition to proliferating excessively, the offspring of this cell appear abnormal in shape and in orientation; the tissue is now said to exhibit dysplasia. Once again, after a time, a rare mutation that alters cell behaviour occurs ( ).

5 If the genetic changes allow the tumour to begin invading underlying tissue and to shed cells into the blood or lymph, the mass is considered to have become malignant. The renegade cells are likely to establish new tumours (metastases) throughout the body; these may become lethal by disrupting a vital organ.

Figure 1.5 Tumour development occurs in stages. The creation of malignant tumour in epithelial tissues is depicted schematically. Epthelial cancers (carcinomas) are the most common malignancies. The mass seen here emerges as a result of mutations in four genes, but the number of genes involved can vary. Reproduced with permission from Weinberg R.A. (1996). How cancer arises. Scientific American 275, 62–70.5

10 Cancer, care, and society

4. limitless replication potential – acquired disruption in cell-to-cell signalling to control cell proliferation does not on its own ensure tumour growth. Cells carry an intrinsic programme that limits their multpilication. A mechanism exists within the body to regulate and monitor the number of times any single cell can replicate itself. Normally this occurs 50 to 60 times before a cell becomes senescent and eventually dies.5 This is dictated by the length of telomeres or sections at the ends of chromosomes; these become slightly shortened each time a cell multiplies, and once below a critical length the cell stops dividing. In cancer cells, an enzyme, telomerase, is produced, which replaces the effect of the telomeres becoming shortened. This enzyme promotes excessive growth and cell multiplication; again, this may be part of the process by which a tumour forms 5. sustained angiogenesis – in order to continue growth and proliferation, cells need to be in close proximity to a capillary blood vessel, therefore malignant lesions, if they are to survive, need to develop the potential to encourage blood vessel growth or angiogenesis. Hanahan and Weinberg suggest that this occurs in a series of steps with angiogenesis being activated in midstage lesions before a full tumour develops.6 The appearance of angiogenic capability is the result of subtle changes in the balance of angiogensis inducers and inhibitors, commonly through alterations in gene transcriptions causing alterations in the complex homeostatic regulation of normal tissues 6. tissue invasion and metastases – in most types of cancer, the primary tumour eventually develops ‘pioneer cells’ that invade adjacent tissues or travel to distant sites, where they may develop into new cell colonies. Invasion and metastases are very complex proceses that are incompletely understood. Proteins involved in the tethering of cells to their surrounding tissue are altered in cells possessing invasive or metastatic capabilities. If these various mechanisms involved in cell growth and multiplication are disrupted, or where normal control mechanisms alter or fail, abnormal

tissue growth will result. Thus, according to Weinberg, cancer occurs directly as a result of ‘runaway cell proliferation’.5 He concludes: Still, despite so much insight into cause, new therapies have so far remained elusive. One reason is that tumour cells differ only minimally from healthy ones; a minute fraction of the tens of thousands of genes in a cell suffers damage during malignant transformation. Thus, normal friend and malignant foe are woven of similar cloth, and any fire directed against the enemy may do as much damage to normal tissue as to the intended target [p.14].

Weinberg returns to using metaphor to explain cancer. This time the intercellular world is not likened to reproduction or architecture, but to ‘war’, to be waged against runaway cells in an attempt to control cancer. Science and scientists make use of such metaphors and other techniques more familiar in literature, as devices to help reveal and articulate scientific facts. In doing this spaces are created in which such facts can become material or real when they are not in themselves visible; for example, as in the complex activities within the cell already described.9 What is important is to understand how these metaphors may also become part of a wider social or cultural understanding of cancer, and themselves create ‘what cancer is’.10,11 There is an important cyclical process here. Cancer, the ‘killer disease’, becomes understood as a monstrous aberration of anarchistic runaway cell ‘beings’, an antisocial process working against the collective organism with grave or even fatal results. This is a powerful image, real to some extent because cancer is common and many people die from it (although, in developed countries, not as many as die from cardiovascular disease, which does not seem to engender such negative images). The ‘runaway, anarchistic monster’ is also a powerful and difficult image for people who have the disease to experience within themselves, when cancer is visible, in the main, only through physical, embodied sensations such as pain or fatigue. Perhaps, given this, scientists should be more careful with the metaphoric and narrative devices they use to explain complex, ‘invisible’ facts. Cancer is part of our culture, understood as a dreaded disease, feared perhaps more than any

What is cancer? 11

other disease, associated with inevitable death, and a death that is painful and unpleasant. Stories of people with cancer, especially celebrities who have cancer, frequently appear in newspapers and magazines. Jackie Stacey has explored how popular cultural narratives are used to tell people’s stories of having cancer.10 These, like fictional tales, or screenplays, follow a path through time, usually involving a heroic figure who struggles to overcome difficulties in the name of truth, justice, or love. The stories, like those in films or books, often involve tales of monsters and heroic recoveries. While the stories are real, in that they are about real people and cancer, in the way that they are told they are constructed to fit this familiar fictional form. She says:10 Cancer never really invades the body as such, but rather reproduces itself from within. Malignant growths secretly proliferate. Like the monster of screen horror, it threatens bodily order and takes over its regulating systems. Horror films often tell tales of the conquering of monsters. Invaders from outside . . . threaten the order of human society and must be exterminated in the name of civilisation. More often than not, the monstrous threat invades the body. Occupied by an alien force or physical presence, the innocent human victims lose control of the body and its functions. Be it vampires, ghouls or monsters from outer space, the horror narrative explores the boundaries between human and non-human, between life and death and between self and other. Its resolution requires the expulsion of the alien from the physical and social body it threatens, and the reestablishment of human order and stability. The heroes (the good scientists, the decent citizens, the protective fathers – and very occasionally the Sigourney Weavers) fight the monster to its death and return the rule of law to its rightful supremacy. Stories of surviving cancer fit easily into these patterns of journey from chaos to control. They combine the masculine heroics of such adventure narratives with the feminine suffering and sacrifice of melodramas [p.10].

These stories use language laced with metaphor; people with cancer ‘battle’ for their survival, and cancer treatment is represented as a military campaign; the oncologist is at war against a killer disease, and cancer treatments are his ammunition. It seems that society as a whole is at war with cancer. As Susan DiGiacomo states:

In a society that has declared ‘war on cancer’ the cancer patient is a victim, held hostage by a disease that has invaded his body, which becomes the battle field on which the war is fought. The dissimilar meanings of corruption and battle combine to promote medical paternalism and authoritarianism. No effort is spared to defeat so evil an enemy, and no general needs to explain his orders.11

The metaphors surrounding cancer also reflect changing attitudes within society towards death.12 Today, as a result of longevity, it is possible for death not to be experienced within a family for a generation. Death has become something that is not part of our daily lives; unlike in premodern times, our relationship with death has increasingly become one of denial of its possibility, rather than an ever-present reality. In this situation, cancer has become a symbol of death itself. On every occasion it presents itself to us it forces cracks into man’s armoury that represses fear of death. As De Beauvoir concludes in her account of her experience of her mother’s death from cancer:13 You do not die from being born, nor from having lived, nor from old age. You die from something. The knowledge that because of her age my mother’s life must soon come to an end did not lessen the horrible surprise: she had sarcoma. Cancer, thrombosis, pneumonia: it is as violent and unforeseen as an engine stopping in the middle of the sky. My mother encouraged one to be optimistic when, crippled with arthritis and dying, she asserted the infinite value of each instant; but her vain tenaciousness also ripped and tore the reassuring curtain of everyday triviality. There is no such thing as a natural death: nothing that happens to man is ever natural, since his presence calls the world into question. All men must die: but for every man his death is an accident and, even if he knows and consents to it, an unjustifiable violation [p.92].

If cancer is understood as a disease through the use of metaphor, it is also in turn a powerful metaphor.14 Cancer is a word that is ubiquitous; it is used to suggest many things, such as, all that is bad in society, or a pervasive fault in a machine, or a flaw in how an organisation is functioning. The cancer metaphor has developed a meaning within our culture that is both part and not part of cancer the disease; it develops a life of its own, and may or may not in the end reflect the disease

12 Cancer, care, and society

in any direct way. The more established the meanings surrounding cancer become, the more these then shape people’s expectations and fears of the disease; the process is insidious. Cancer is all around us, quite literally because of the numbers of people who have cancer or who will be affected by cancer because someone they know has it. It is also all around us in the way in which it is part of our culture, and how we use what we believe about cancer to convey what we mean about other things; this in turn affects how we respond when we come across someone who has cancer. It is understanding this, and finding ways of responding to this complex interrelationship between disease and its various constructions for individuals, for professionals, and for health care, that is the foundation of caring.15,16 What is cancer? This is an unanswerable question: it is many things, it is what you make it, and it is what others make of it.

References 1. Cancer Research UK (2004). Cancerstats Monograph. London: Cancer Research UK. 2. Stewart B. and Leihues P. (eds.) (2003). World Cancer Report. Lyons: International Ageny for Research on Cancer. 3. Donovan M.I. and Girton S.E. (1984). Cancer Care Nursing, 2nd edition. Norwalk, CT: Appleton Century Crofts, p. 15. 4. Kogevinas M., Pearce N., Susser M. and Bofetta P. (eds.) (1997). Social Inequalities and Cancer. Lyons: International Agency for Research on Cancer.

5. Weinberg R.A. (1996). How cancer arises. Scientific American 275, 62–70. 6. Hanahan D. and Weinberg R.A. (2000). The hallmarks of cancer. Cell 100, 57–70. 7. Yarnold J.R. (1996). What are cancer genes and how do they upset cell behavior? In Yarnold J.R., Stratton M. and McMillan T.J. (eds.) Molecular Biology for Oncologists, 2nd edition. London: Chapman and Hall. 8. Carr A.M. (1996). Cell cycle control and cancer. In Yarnold J.R., Stratton M. and McMillan T.J. (eds.) Molecular Biology for Oncologists, 2nd edition. London: Chapman and Hall. 9. Lenoir T. (1998). Inscription practices and the materialities of communication. In Lenoir T. (ed.) Inscribing Science: Scientific Texts and the Materiality of Communication. Stanford, CA: Stanford University Press. 10. Stacey J. (1997). Teratologies: a Cultural Study of Cancer. London: Routledge. 11. DiGiacomo S.M. (1987). Biomedicine as a cultural system: an anthropologist in the kingdom of the sick. In Baer H.A. (ed.) Encounters with Biomedicine: Case Studies in Medical Anthropology. New York: Gordon and Breach, p. 323. 12. Sontag S. (1977). Illness as Metaphor. London: Allen Lane. 13. De Beauvoir S. (1969). A Very Easy Death. London: Penguin, p. 92. 14. Reisfield G.M. and Wilson G.R. (2004). Use of metaphor in the discourses on cancer. Journal of Clinical Oncology 22, 4024–4027. 15. Corner J. (1997). Nursing and the counter culture for cancer. European Journal of Cancer Care 6, 174– 181. 16. Hunsker Hawkins A. (1999). Reconstructing Illness: Studies in Pathography, 2nd edition. West Lafayette, Indiana: Purdue.

CHAPTER TWO

Knowledge and caring: a philosophical and personal perspective Alan Cribb

Preamble Most days after I got home from school I would sit on a stool by the kitchen work surface and talk to my mum. She would be making dinner for the family and I have particularly clear memories of her preparing vegetables – peeling and chopping them while I pinched bits. I was eager to report the details of my day and to give her the benefit of my opinion on all manner of things. I was very interested in science at the time, having been fired by the thought that everything is made of molecules! Not only did it not occur to me to help but I don’t think it ever occurred to me to ask about her or her day (she would just have returned from work), or about whether she had anything on her mind. It was one-way traffic. She would listen quietly, sometimes asking questions, occasionally offering advice. I suppose if I know anything worth knowing about care I started to learn it at times like that – being cared for body and soul as a matter of routine, and scarcely appreciating it. So writing about caring seems a bit odd. Knowledge is a different matter. Knowledge belongs in books. School was about knowledge and I carried some of it home in my physics and chemistry textbooks, shut away in my school bag. Many people think knowledge ought to be only written about in the third person, that it is something formal and impersonal. There are academic conventions to adhere to (Bloggs, 1997). If one is going to write about knowledge one had better be

on one’s best behaviour. Furthermore, one had better sound like an intellectual. Epistemological analysis demands a rigorous idiom (that sort of thing). So there is the problem – how to write about these two different concerns together; how to do justice to my mum and the science textbooks. I have to admit at once that I cannot. I am in a textbook and I will have to be fairly ‘textbookish’, but from time to time I may also have to rebel.

PART ONE – PICTURES OF KNOWLEDGE Two worlds I want to start by reinforcing some of the contrasts in the preamble, by drawing a tidy distinction between two worlds – the scientific world (or more precisely the ‘world as known by science’) and the ‘human world’. No doubt, like all such distinctions, it should not be drawn too tidily, and it may even collapse under close inspection; but there will be time for qualifications later. I want to argue that the reason for emphasising this contrast is because it plays a very important role in so much of modern life. It shapes so much of what we do and think. Consider the furniture in your home. Items of furniture will have stories attached to them. Simple

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stories: ‘This was a present from x’; ‘This was a bargain from y’. Elaborate stories: ‘Remember the first meal we had at this table, when I hardly knew you . . .’; ‘This bed could tell a few tales . . .’. But suppose we are asked whether these stories are really about the furniture. Are they not only projections of our concerns, which we ‘tag’ onto them? Surely, it could be said, if we want to know about tables we should turn to science. Chemistry can help us to understand the material constitution of a table, and physics its ultimate constitution. The table is really some sort of configuration of energy. It appears to our common-sense eyes to be brown and solid, but in itself it is not even these things. Appearances are deceptive. Of course, for virtually all domestic purposes we do not need to concern ourselves with the ‘science of furniture’ (although we might note in passing that the furniture industry employs people with expertise in material sciences, ergonomics, etc). We can manage very well with common sense or ‘lay beliefs’. But at the back of our minds we know that, at least with regard to material things like furniture, common sense is second rate. Our lay judgements are unreliable and sometimes plain wrong. Most people could make sensible guesses about which materials are most hazardous in a fire, but most people would get some of it wrong. This is one of many ways to ‘die of ignorance’. What applies to furniture is certainly true for microwave ovens and television sets, and all the paraphernalia of modern life. The lay realm is one of opinion, guesswork, and myth. It is part of the real world but it is also shaded from it by various degrees of scientific ignorance. None of this would be of much consequence if it only applied to domestic furniture, but it is possible to see this as a mere instance of a general truth. The modern world is, according to many perspectives, one in which lay beliefs have been eroded, demoted, replaced, and transformed by scientific knowledge. Secularisation is perhaps the most significant example of this change. A cosmos that has a personal creator at its heart has been superseded by a Godless, ‘cold’ universe. Human beings do not have an exceptional place in the meaning and the mystery of the world; they have emerged ‘ordinarily’ out of the processes of evolution, and they are biological rather than theologi-

cal creations. Many other parallel and allied shifts have taken place. Weber calls this process, by which the ‘magic’ is taken out of the world by a modern, scientific, rationalistic spirit, ‘disenchantment’. When we see lambs or daffodils they may speak to us of hope and renewal, of an underlying sense of purpose, of belonging. But we also know that they are just natural ‘blind’ phenomena, and in a sense meaningless ones, and that our metaphysical interpretations of them are misleading. (I am deliberately overstating this. Of course it is possible, indeed probably the norm, to entertain both ‘scientific’ and ‘lay’ beliefs at the same time, to live, as it were, in two worlds. I will come back to this shortly.) Furthermore, what I am calling the human world is being displaced and colonised not only by the natural sciences, but also by the social or ‘human sciences’. Every facet of our lives is subject to increasing quantities of sociological and psychological research. Here also, personal and commonsense opinion is set beside ‘more expert’ analyses. An individual struggling with an incident of crime, or divorce, or illness will make their own interpretations of events. But much of the social scientific research will be designed to transcend these interpretations, to identify the underlying explanations, the underlying reality. A wife may go to the doctor on behalf of her husband because ‘he’s too busy at work’. But a sociological eye will see that the couple are acting out gendered roles. Over time, as with the natural sciences, these social scientific lessons will become incorporated into a changed set of lay beliefs. Thus, for example, someone suffering from grief might anticipate that their experience may come in certain well-documented packages – in complex and contradictory feelings, in waves, in stages and so on. It seems to me that most of us live in two worlds. The ‘scientific world’ has not expanded to fill every corner of our experience, and even in those areas where it is generally deemed to uncover the real nature of things many people do not regard it as sufficient. So, even in the most secularised and scientifically minded cultures, people still live in a relatively enchanted world. This may be experienced as a source of tension or ‘dissonance’ in individuals’ lives. They may, for example, be aware of a gap between their relatively ‘tough-minded’

Knowledge and caring: a philosophical and personal perspective 15

public persona in which they account for the behaviour of others in sociologically and psychologically informed ways (say as ‘rational economic consumers’), and their ‘tender-minded’ private self (who takes romantic love seriously and sees their loved one as someone of unique and infinite worth). They may rely on the predictability of a scientific and technological infrastructure, while pursuing scientifically dubious or even antiscientific belief systems. We cannot but acknowledge the explanatory power and the usefulness of scientific ways of thinking, but we do not want to live in a cold world. Disinterested rational abstract inquiry helps us to gain mastery over our environment but in doing so it makes it less hospitable. How will we be better off if we gain control of the world but lose our soul and our home? As I’ve already indicated, this contrast between the scientific and the human worlds is in many ways too simplistic, and it is tempting to overstate the dominance of a scientific perspective. I therefore want to make some remarks designed to qualify and challenge the impression I have given up to this point. But I will also insist that something like this crude picture is a crucially important ingredient of life in the modern world. Commentary 2.1 Reading through this chapter some time after it was drafted, I think I see what I am trying to do and say in it. It is very much a personal piece (maybe a self-indulgent one); I am not trying to say anything original but simply to sort out ideas about knowledge and caring, some of which have come from studying philosophy and some from my personal life. I want to take issue with the view that knowledge and caring are two entirely different things, the former being ‘clever’ and the latter ‘natural’. I am starting by looking at some ideas of what real knowledge is. The aim is to prompt the reader into reflections on their own ideas about knowledge and caring, and the relationship between them.

Real knowledge (mark 1) Here are some objections to the picture set out in the last section. First, why speak of ‘science’ when really I am drawing a contrast between expert

knowledge and lay beliefs? Surely most forms of knowledge are not scientific, and am I not stretching a point even by parcelling sociology and psychology in with the natural sciences? Second, the various sciences have not had such indisputable success. At best they offer one kind of explanation of one aspect of the world – they are not a substitute for theological, historical, or cultural accounts of the world. Third, many people – even in the ‘most advanced’ societies – would, as I have hinted, see science as something on the margins of their life, as something largely irrelevant to their central concerns. How can this be reconciled with the picture of the scientific world inexorably displacing and colonising the human world? All these objections have merit, and they help to add some confusion to what is, after all, a confusing scene. The rationale for starting with the tidy distinction, and the crude picture, is that it reflects a powerful current (arguably the current) of modernisation – the idea that human progress comes from the growth and application of knowledge, and that above all real knowledge is scientific knowledge. This is one of the ruling ideas of modern societies. Constant attempts are made to dethrone it and to kill it off, but it is not easily dislodged. The philosophical version of this ruling idea is called ‘positivism’. There are many variants of philosophical positivism, and many internal and external controversies about them, but it is worth briefly sketching out some of the key components of what might be called classical, or naive, positivism. • Methodological monism – a fancy name for the idea that there is only one kind of method suitable for the production of knowledge. The natural sciences are typically taken to be paradigms of knowledge. Many traditional belief systems (especially metaphysical theories about transcendent realities, but also ‘thiswordly’ ideological, moral, or aesthetic judgements) are seen to be without warrant, or even without meaning. In general, a sharp demarcation is made between real knowledge, which satisfies appropriate methodological rigours, and mere belief, superstition, and plain nonsense, which falls beyond the line.

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• The quest for generalisations and structures – the most favoured method involves the discovery, formulation, and testing of law-like generalisations that describe particular cases or events as instances of some general phenomena. (For example: this bucket of water conducts electricity because substances with such and such properties conduct electricity; this economy is suffering from inflation because economies with such and such properties always do so.) So the generalising manoeuvre is accompanied by another one – the identification of the underlying combination of properties or ‘structures’ that help to explain the phenomena. We cannot understand the nature of water or economies, or anything at all for that matter, by looking at their surfaces. We need to understand their inner constitution, the reality beyond the surface appearance. • Prediction and control – the value of law-like generalisations is that they put us in a better position to intervene in events with predictable results, i.e. they enable us to exercise greater control over events. The capacity for effective technologies (including both mechanical engineering and social engineering) is enhanced. • Reductionism – the shift from surface appearances to underlying structures is sometimes called reductionism. Although this is principally about explaining things, it also suggests that something is ‘taken away’ by the explanatory move. All manner of things are rendered mere appearance, not fully real. There are many forms of reductionism, some of which are very radical and, if accepted, denude the world of all kinds of phenomena. ‘Physicalism’ is the thesis that everything can be explained by the laws of physics. This is the adult version of my juvenile enthusiasm about everything being made of molecules. If, as seems plausible, everything is made of matter or energy, why not try to explain everything (tea parties as well as tea cups) in purely physical terms? (Sociology also practises many types of reductionism, the most extreme being the predominantly antipositivist ‘social construction of reality’ thesis. Here it turns out that many seemingly substantial things do not really exist in their own right but only as a product of human languages and practices.)

Whether or not positivism has been successful as a philosophical position (and a huge amount of work has gone into arguing that it has not), it has certainly been extremely influential both in the academic sphere and in the wider community. In the academic sphere its influence is shown, for example, by the incorporation of scientific methodologies into a wide range of subject areas. Indeed, in many areas ‘research’ is more or less equated with scientific style research. Some of its immense impact on the wider culture is indicated in the previous section. Before considering some of the main antipositivist arguments, I will say a little more about the wider cultural associations of the sharp demarcation between real ‘expert’ knowledge and mere ‘lay’ belief. I want to summarise a conception of real knowledge that has widespread currency, which I will call ‘the encyclopaedic picture of knowledge’. In this picture, knowledge is represented by an encyclopaedia. It is something solid, substantial – something in which we can have confidence. It is also something that can be written down, that can exist in an impersonal form and can be used as a common resource. Of course, more would have to be added to complete a full drawing of this picture, but the idea of an encyclopaedia will do for a thumbnail sketch. A similar picture is evoked by the idea of a non-fiction library. Here knowledge is arranged by subject as well as alphabetically. Time and space are mapped through the history and geography of the world, period by period, region by region. The natural and physical aspects of the world are covered by biological and physical sciences. We can ‘zoom in’ to organs, cells, genes, and so on, or ‘zoom out’ to solar systems, galaxies, and beyond. Human culture is stored in all its religious, aesthetic, practical, and technological varieties. Some encyclopaedias are organised in a similar manner, and are, in effect, ‘portable libraries’. We can imagine them as a record of all accumulated knowledge, organised into an interconnected and mutually supportive matrix. If we operate with a picture like this, we may also picture learning as ‘studying’. There we are at the beginning of a course; over the horizon the exams are looming, and the problem is how are

Knowledge and caring: a philosophical and personal perspective 17

we going to get all the knowledge in the books on our shelves into our heads in time. When we go into the library and the stacks of books multiply, it is natural to panic – our heads are so ‘empty’! But there is also something rather dead or inert about an encyclopaedia. We seem to be able to get along with life very well while it gathers dust. Many of the things we know, we learn without recourse to books, and furthermore there are many things we would be foolish to try and learn from books. (This is the sense in which caring doesn’t belong in textbooks.) Libraries are all very well, but surely virtually everything that matters goes on outside libraries? Are we not right to regard someone who does not appear to realise this as rather foolish and callow? Here I am only playing with impressions, and with vague outlines and contrasts. But I think there are important clues in these contrasts between the ‘bookish’ and the ‘non-bookish’ parts of life; clues that point in the direction of another picture of ‘real knowledge’, a picture that does not place our everyday, practical, and personal knowledge in the box labelled ‘seconds’, and that helps to restore the primacy of the human world.

Real knowledge (mark 2) ‘And now for something completely different.’ This was one of the catch phrases of the Monty Python team. It was used – cleverly – to provide continuity when there wasn’t any, but it will do for me as well, because I intend to say something about humour. Nearly everyone knows how to be funny, and some people are very good at it. There are few people who go around being self-consciously and deliberately funny (and this is very difficult to carry off successfully and without causing annoyance), but we can all try to see ‘the funny side of things’. Smiles and laughter are a very large element of the compound that makes life tolerable. Although they can be used divisively, their natural tendency is to draw people together. They are part of the warmth and the enchantment of the world. Even if we come to the conclusion that the universe is meaningless, they help us to ‘look on the bright side of life’.

But although we can perfectly properly say that someone knows how to be funny, or knows how to see the funny side of life, we would not expect to find this kind of knowledge in a book. In fact, we know it is exceedingly difficult to theorise about humour and that someone who does so might in any case (or as a result) be pretty humourless. Writing about humour is at best a small part of knowing about humour, and we are inclined to say that the real knowledge falls outside books. There are many sorts of things about which this is true. Perhaps the most obvious set is ‘physical’ skills such as swimming, typing, or driving a car. But there are other more general and more fundamental sorts of knowledge that fall into the same category, such as speaking English (or another natural language), or – equally important for our purposes – knowing how to conduct a conversation. Indeed, these relatively conspicuous examples are only the tip of the iceberg, or rather they are some of the prominent features of the human face obscured by the currency of ‘encyclopaedic knowledge’. These reflections serve as an introduction to a ‘mark 2’ picture of real knowledge, which I will call ‘the personal resource picture’. In some ways (but not all) this can be seen as the opposite of the mark 1 picture. According to this conception, knowledge is personal, not impersonal. Real knowledge cannot be written down; rather it can only exist as part of the outlook, dispositions, and skills of people. (Of course some ‘shadows’ of it can be written down, just as something of the knowledge of someone who is an expert cook can be written into cookery books.) This sort of knowledge is not acquired by studying, but by doing, by living. Here experience and practice make all the difference, and being able to recite ‘knowledge’ counts for little or nothing. Similar distinctions are sometimes made by differentiating between ‘knowledge’ and ‘skills’, or between ‘theoretical knowledge’ and ‘practical knowledge’. But these other terms can be misleading if they suggest that the former type of knowledge is intellectual or mind-centred and the latter is essentially technical or physical (and body-centred). Stupid divisions have often been made between ‘working with one’s brain’ and ‘working with one’s hands’. These divisions are

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conceptually stupid because human activities (with very few exceptions) are not delegated to parts of persons, and because an individual is a single unified ‘embodied intelligence’, not a strange combination of a thinking disembodied executive with an unthinking physical workforce. And, as I have indicated, this division is also closely bound up with peculiar social divisions, which link kinds of work with personal and social status. The personal resource picture of knowledge, therefore, is not meant to pick out only practical skills, except in the sense that all knowledge involves ‘skills that have to be practised’. These include thinking skills and theoretical skills. Thus it is not only being a good piano player or being a good listener that involves personal knowledge, but also being a good historian or physicist. In all of these cases, the real embodied knowledge cannot be written down. (This is not to dismiss completely the kind of knowledge that can be written down. But note that this does not consist entirely of the sort of abstract impersonal truths that the encyclopaedic picture would suggest; rather, much of it represents ‘personal voices’ with whom we, as readers, are in conversation.) Commentary 2.2 My main preoccupation here seems to be with the relationship between ‘book knowledge’ and ‘personal knowledge’. Is one more basic than the other? Is one more important than the other? How do they fit together? Perhaps this is only a personal preoccupation – something I’ve got a ‘hang up’ about. But I suspect it is something of general relevance. Everyone has to do more and more exams and assessments. More and more academic books are being produced and read. Yet it is clear to most people that there is much more to learning and development than the learning that takes place ‘on paper’. These days, is enough emphasis placed on ‘the university of life’?

Knowledge mark 2 belongs squarely to the human world rather than ‘the world as known by science’. Indeed, it helps us to see how the latter is not independent of the former but is supported and sustained by it. The naive positivist would picture ‘the world as known by science’ as the real world, the solid foundation underpinning the

‘apparent’ world of everyday human affairs. But it is equally possible to see our everyday experience – of furniture, and friends and so on – as primary, as providing the frame of reference that makes possible the various abstractions of science and expert knowledge, and as providing the only real context in which these abstractions can be applied and tested. This is the message of the most influential antipositivist philosophies of knowledge, such as the ‘phenomenological’ and ‘hermeneutic’ approaches. This is not the place to do justice to these approaches, but a short summary of their central tenets will serve to sum up much of the ground I have covered so far. These approaches emphasise the distinctiveness and the priority of the human world, the world of our consciousness and language. If we had to do an inventory of the kinds of things there are, we ought to be struck by the immediacy and allpervasiveness of some apparently non-physical things – namely, states of mind and meanings. (Some thinkers would argue that these are the only things whose existence we can be sure of!) Human history and culture are made up of meanings and stories, as are our individual lives, and all of these things can only be properly understood and known about by taking these meanings seriously, rather than dismissing them in favour of some spurious ‘science’. In fact, the stories that weave our domestic furniture into our lives indicate a reality just as substantial as the stories that scientists tell about the material of which they are made. This suggests a different relationship between expert and lay ‘knower’. Instead of seeing the lay person as ‘falling short’ of knowledge, as essentially ignorant, these approaches see the processes of ‘everyday knowing’ as entirely continuous with, and the basis of, more specialised forms of knowledge. Many important forms of expertise are simply more practised, more disciplined, and hence more developed versions of so-called ordinary ‘lay’ practices. In these instances there are differences of degree rather than kind. The basic (and perhaps also the highest) form of expertise, which is open to all, is to know how to operate as a member of the human community, to be able to understand what others are saying, to have a sense of what matters, and to be able to contribute to one another’s lives and well-being.

Knowledge and caring: a philosophical and personal perspective 19

Parenthesis

I remember the shock when Dad rang to say Mum had got cancer the first time. It was a few minutes before I reacted. I sat down and kept looking in the direction of the television programme I had been watching. Outwardly the world was the same but it had been transformed. After a few minutes the first signs of this began to trickle through in waves of messy and contradictory feelings. Of course, I had no idea about the long years of upheaval ahead – the activity, the waiting, the uncertainty, the drama, and the routine that would dominate our lives, a flood that would sweep us and all our lives along, hurling the familiar aside, ripping up our bearings, and yet demanding sanity and steadiness. In that first few days it was relatively simple: there was concern for Mum and Dad, there was the imperative to be ‘OK’, there was hurt and fear to be kept at bay, and there was the urgent need to understand what was happening at the hospital; what the successive tests indicated, what the implications were, what was being done, what more could be done. Those early hospital visits had two aspects. Here was the site of intervention, here were drips and dressings, here was technical expertise. Yet there was my mum, out of place, and with her spirit quietened. She was also determined to be OK, but with a burden she couldn’t quite displace from her face. The face of health care and my mum’s face locked together. With the foolishness of a young man, I wanted a quick technical fix; I was impatient for progress, I wanted to reassure everyone (not least myself) that everything would soon be alright. But, of course, even if a relatively quick fix had been possible it would not have met Mum’s immediate needs. Her life was overturned, she was away from her home, surrounded by strangers and strangeness, the ‘taken for granted’ gone, and she was alone.

PART TWO – CARING KNOWLEDGE What are the connections between knowledge and caring? There are many, and they depend, of course, on what we mean by ‘caring’. I will sketch out two possible connections by way of an introduction to this half of the chapter.

First, caring can be seen as an application of knowledge – in order to care for someone (assuming a health service context for now), there are a great many things we need to know. Some of these things fall clearly into the category of scientific and technical knowledge. Diagnostic procedures, from pulse rates and temperatures to sophisticated imaging techniques, are one example. They enable us to look below the surface, to get beyond the individual’s subjectivity. Someone may feel perfectly well, with no desire to be a patient, but a routine screening procedure or the investigation of some apparently trivial anomaly might uncover a ‘problem’, and a whole clinical journey begins. Despite proper concerns about the medicalisation of life, most of us, most of the time, are grateful for the instruments and techniques of clinical science. However, most of us, most of the time, are in some respects ‘squeezed out’ by clinical science. When we are unwell we are both the centre of attention and also ‘on the margins’ – hanging around in the waiting room of science. There are clearly other non-scientific sorts of things we need to know in order to care for someone. We may need to know a great deal about them (depending on how extensive our interactions with them are), e.g. how they feel, what their hopes, fears, memories, beliefs, opinions are; we may need to know about their home life, friends and relatives, work, leisure, cultural and religious life. In short, we need to get to know about them as a person, and the social and cultural network that shapes their identity. But this takes us into a different realm, and a second sort of connection between knowledge and caring. Up to now the implication has been that knowledge is a mine of general and specific ‘information’ that we deploy when we care for someone, and that we need different sorts of knowledge because people are complex beings. This is to rely on an encyclopaedic picture of knowledge. But as we have already seen, this is an inadequate picture for many purposes. What is crucial is not knowing in the abstract, but embodied knowledge, or know-how. To care for someone, even if that someone is construed as an object of scientific knowledge, I have to be prepared to work with that person. To care for someone as a person I have, to some extent, to

20 Cancer, care, and society

get to know them, and not just ‘about them’ in the abstract. Indeed, a substantial component of caring for someone is precisely paying attention to, and concerning oneself with, the person for whom one is caring. This is one of the respects in which caring can be seen as a form of knowledge, and not merely the application of knowledge. This may seem an odd way of talking but it serves to emphasise a number of things, which I will merely assert here. Caring is not some warm, ‘wishy-washy’ feeling but an exacting and demanding set of skills, which exercises all of our faculties and judgement (including our ‘emotional judgement’); it is a form of know-how that admits of degrees of expertise and is developed through practice and experience as well as reflection. To be ‘a caring person’ is not an alternative to being an intelligent person, it is necessarily an exercise of intelligence. In what follows I hope to illustrate and defend these assertions, and also to indicate some of the challenges of caring as a form of expertise. In particular I want to look at: (a) the relation between technical and person-centred elements of caring; (b) the idea of ‘emotional expertise’; and (c) the ways in which cultural and institutional contexts affect the possibilities of caring. These issues are closely interrelated but here I will separate them out as far as I can. But I will start with another and different distinction, which could be a source of confusion. Caring has both a practical and an affective side. We can use the label ‘caring for’ to indicate the practical dimension of caring. If I care for someone then I look after them, give them food or medicines, tend to their needs, and make sure the environment is suitable for them, that they are comfortable or sufficiently stimulated, etc. I might also care for them by listening to them, by treating them with respect, by ensuring that they don’t feel ignored, etc. We can use the label ‘caring about’ to indicate the affective dimension of caring. If I care about someone then I have feelings of concern or regard towards them, and to some degree their welfare matters to me. If we care about someone, we are inclined to want to look after them, but the two do not necessarily coincide. At least up to a point we can care for someone without caring about them, and vice versa.

Technical and person-centred caring In drawing a distinction between technical and person-centred facets of care, I am not referring to the practical/affective distinction discussed above; rather, I mean to draw attention to two interconnected elements of practical care, or ‘caring for’. What I mean by technical care is all the care that derives from technical knowledge, or, more precisely, knowledge that treats the individual as an object to which generalisations apply. What I mean by person-centred care is care that depends upon regarding the individual as a unique subject, as a particular person with a distinct biography, outlook, and set of preferences. In the main, ‘technical caring’ and ‘person-centred caring’ are complementary. Human beings can be seen quite properly as both part of the ‘world as known by science’, and part of the human world. They are made up of both matter and meaning. If we want to understand them, and care for them, we must take equally seriously those aspects of them that can be generalised about and those that cannot. It is not very easy to draw a definite line here, but some things are certainly appropriate objects for technical knowledge (e.g. blood, bones, and bodies generally), and some things certainly require a more person-centred approach (e.g. listening to someone’s ‘story’). Both these aspects of care are important. If we are interested in ‘technical success’, we are likely to focus on health ‘outcomes’; if we are interested in ‘success with persons’, we might look at whether the person feels valued. These two aspects of care are often complementary but there are also respects in which they can be in tension with one another. They are complementary because if we want to achieve good outcomes this itself can provide motivation to work closely with a patient and treat them with respect. Their compliance and/or their positive state of mind might contribute to the technical success we want. This gives us an instrumental and derivative reason to value people (although the real direction of derivation is the opposite – technical success is valuable because people are valuable). It is tempting to emphasise this complementariness, and indeed to go further and say that we should not even separate out these two

Knowledge and caring: a philosophical and personal perspective 21

elements of caring, that there is only good caring, which must integrate these elements. This may be true in practice but it is also necessary to be aware of the possible tensions between these elements. A mind set, or a set of practices, which is geared to treating people as objects for technical intervention is not necessarily one well suited to responding to persons. Partly this relates to the costs of a ‘conveyor belt’ approach to human dignity and sensibilities, but it has widespread ramifications. Many of the routine, but important, issues in health care ethics spring out of these tensions. For example, a specific drug may be routinely prescribed and regarded as optimal for a specific condition, but should it be prescribed if the patient has a considered preference for something else and there are alternatives available? A father wishes to delay a critical operation on his daughter until after his partner flies in from overseas – how far should these wishes be respected? Whatever is for the best here, these alternatives may not even come to light unless the environment is relatively ‘person-centred’. Achieving the right balance between these two elements of care will serve as an example of why caring is an exacting business. Not only does it potentially call upon a wide range of knowledge but it depends upon integrating different sorts of considerations together. This means paying attention to both technical and personal factors, and gaining confidence and experience in making continuous practical and moral judgements. However, this example may give the impression that what I principally have in mind is some kind of cognitive or intellectual challenge – the difficulty of ‘weighing together’ different considerations. Although I am happy to see this as an intellectually exacting process, I also have in mind the fact that it is, at the same time, emotionally exacting, and that it is the need for ‘emotional expertise’ that marks out the real challenge, and the special intelligence, of caring.

Emotional expertise I am using the expression ‘emotional expertise’ to refer to the know-how at the heart of caring. Some people will dislike the expression and the whole

idea of emotional expertise. There is a common view that emotions are things that ‘just happen’ to us; that we ‘suffer’ them rather than ‘do’ them. This being the case, how does it make sense to talk of developing expertise with regard to them? In addition, does not talk of expertise imply that there are ‘emotional experts’, that some people are ‘good at emotions’ and other people ‘bad at emotions’, and is this not unnecessarily elitist and divisive? I have sympathy for these thoughts, and I have deliberately chosen the label ‘emotional expertise’ because it provokes them, but on balance I see these reactions as misguided. I think that in some respects: (a) we are responsible for emotions; and (b) it is possible to be more or less skilful and conscientious in the exercise of these responsibilities. What is more, this is not just my opinion but it is a view endorsed by a great deal of ancient and modern thought and scholarship. Of course, ‘emotional expertise’ is an umbrella term, and using it may obscure many complexities and controversies; there would no doubt be disagreement about its components and how they can be combined. One tradition with bearing on this matter is discussion of ‘the virtues’, i.e. admirable and desirable qualities of character, such as courage or wisdom. Although ‘virtues’ may sound like an archaic term, we still operate with closely related ideas. For example, we write ‘character references’ for people, and in so doing we may talk of their honesty, loyalty, tenacity, fairness, balance, and so on. We admire friends or acquaintances for who they are and not just for what they achieve. If we are bringing up children we typically want them to be ‘good’ – to be people whom others respect for their integrity and dispositions. In all of these cases, we are concerned with ‘the virtues’. In Western academic philosophy, the discussion of the virtues normally begins with reference to Aristotle’s ethics but there has been a continuing thread of discussion on this theme, and virtue theory, including Aristotle’s related work, has had a substantial revival during the past 20 years. I cannot do justice to these academic debates here. But perhaps I can indicate a few important issues arising from them. First, we are inclined to hold people as to some extent responsible for their character (although, of course, many other factors

22 Cancer, care, and society

outside an individual’s control help to determine character). Both religious teachings and the huge self-improvement industry are testament to the belief that we can make a difference to the ways we think and act, to the kinds of people we are. Second, character is not just about how we reason at some abstract level, but it is also about how we feel about things, how we respond to things, and what our inclinations and desires are. If both of these claims are true then it follows that we are to some degree responsible for our emotional life, that it is possible to conceive of emotional development, perhaps even of emotional education or learning. This, in broad terms, is certainly what is entailed by much of the literature on the virtues. Commentary 2.3 I suppose what I am getting at here is fairly straightforward: there are people we admire because they are good with others. They may possess talents and skills in this regard that we may not. Do we think that these qualities are just part of life’s lottery, or do we, to some degree, feel that these ‘role models’ have earned our respect? I think the latter. Furthermore, if we want to aspire to some of these admirable qualities I think we need to try to become more clear about what these talents are and how they can be developed.

Perhaps I can make this seem more plausible by using an example. Imagine a young man who is very jealous about his girlfriend. If he sees her talking for any time to other people he feels anxious and resentful, and these feelings can easily collapse into despair or anger. We might say that he ‘cannot help’ feeling like that, perhaps even that these feelings are ‘natural’. We might feel sorry for him (and his girlfriend!). It is unfair to say that he should just ‘snap out of it’. But notice what a difference the facts make. Suppose his girlfriend has never given him any reason to be jealous; suppose we have it on the best authority that nothing in her actions or in her heart should give him cause to worry. We would surely draw this to his attention. We would ask him to reappraise the situation, and over the course of time we would hope that he would come to see things differently and, as a result, to some degree to feel

differently. If we were speaking bluntly we might say, ‘You’ve got to learn not to feel like that!’ Now this example works because so many emotions, including jealousy, are intimately related to our beliefs about the world. So if our beliefs are unreasonable (or irrational), then the emotions that relate to them will be, to use a neutralsounding phrase, ‘somehow inappropriate’. Of course you cannot just switch your beliefs or feelings on or off. It takes time and practice to change. Consider a visitor who is frightened by being close to a cancer patient, or a novice nurse who feels nervous and inadequate when performing routine procedures. In these cases too we might be sympathetic while, at the same time, hoping that they would learn not to have these feelings. Notice that this is about emotional change and not just about covering feelings up, which is also a necessary, but different, aspect of managing our emotions. In all the examples above we might expect the individuals to attempt to cover up their feelings as a shortterm strategy; in other instances, it may be necessary to learn to ‘put up a front’ in the longer term. (Managing our own emotions involves a combination of change and ‘acting’ – here I am discussing the former rather than the latter, but I ought to at least make reference to the need for some ‘acting’, and of course the inherent problems of inauthenticity and self-alienation.) Virtue theory is based on the insight that our understanding, feelings, and dispositions form compounds such that we cannot effectively develop these elements separately. Someone who is prudent (or honest, etc) sees the world in certain ways, feels in certain ways, and acts in certain ways; this is what is involved in having a virtue. Of course there is room for debate about which set of virtues we believe people in general should aspire to (and also about the virtues most fitting for certain roles or positions). Similarly, it is unclear exactly how far, and in what respects, our character is capable of being shaped by our learning and practice. However, it would seem foolish and irresponsible (and fly in the face of our experience) to dismiss completely the notion of character development, and with it the notion of emotional learning and growth. This discussion of virtues has concentrated primarily on self-development and on managing our

Knowledge and caring: a philosophical and personal perspective 23

own emotions, but what has this got to do with caring for others? Perhaps it is obvious. The jealous boyfriend is not in a good position to care for his girlfriend. The visitor who is frightened of cancer is not well placed to care for the patient. The nurse who feels self-conscious and inadequate is going to be less helpful to her patients than she might be. We cannot really aspire to deal with other people’s concerns and feelings unless we are dealing with our own. I will not stress this point again but I hope that it will be seen as the backcloth to what follows. As we have seen, a crucial aspect of caring for persons is to relate to them as persons and not as objects. There are other aspects of caring that do not depend quite so much on this. For example, we could say that a government cares – practically cares – for the population by introducing clean-air legislation (or other health-protection mechanisms). In the case of these interventions, people can be treated as biological creatures (although there will usually be accompanying processes of consultation and education as well). One way of bringing out the differences is to ask how far the technology in our hospitals and health centres could take over from human beings. There are, no doubt, areas where it makes little or no difference whether a machine or a human being does the caring, but there are others where it seems to make all the difference in the world. If we are in a room full only of technology, we are still alone. Here, again, is the double-aspect of persons – we are made of both matter and meaning, of both stuff and subjectivity. If we are to be ‘treated’ properly then both components need responding to, and our subjectivity can only be recognised and responded to by another’s subjective awareness. Of course, if a human carer behaves exactly like a piece of technology, like a sophisticated robot going through procedures, then the fact that they are a person makes no difference. What is this special ingredient of caring of which human beings are capable? I will borrow the term ‘emotional labour’ to describe it. A number of social scientists and feminist scholars has used this term to indicate a substantial and vital, but typically neglected, sphere of human activity and relationship, i.e. the hard work that goes into acknowledging and meeting

one another’s emotional needs. Most of this work is unpaid, but it goes on in every setting and context. It is largely and characteristically undertaken by women. It is often informal and invisible – it tends to take place ‘behind the scenes’, to be off the official agenda (some parts of health care, and pastoral care in education are, to varying degrees, exceptions). In a climate in which measurable public ‘outputs’ are valued, emotional labour is likely to be grossly undervalued, if not unnoticed. (This is itself a good enough reason to adopt the term.) Different scholars will write about different facets of emotional labour, and will continue, no doubt, to use the term to mean rather different things. It is, I think, a strength of the term that it can be used to refer to a wide range of things. But here I am borrowing it simply to help capture some of what is entailed by the affective aspect of caring. To think of caring as ‘hard work’ suggests not only that it is strenuous but also that it is skilful. To talk of ‘caring’ may sound wishy-washy to many people; to talk of ‘emotional labour’ sounds – I think helpfully – as if you might be indicating a form of expertise, a demanding discipline. (However, there is the danger that we might start thinking of the affective aspect of caring as if it were some technical and highly esoteric skill, which would be most unfortunate.) One way of indicating some of the expertise required to be an effective ‘emotion worker’ is to consider the range of relevant factors. Clearly, affective care has to be responsive to circumstances and to individuals. There is something farcical about thinking one could go around indiscriminately caring for people. Furthermore, it is downright intrusive and disrespectful to assume a licence to work upon other people’s emotional well-being. Most of the time all we need to achieve is what might be called ‘good manners’, by being polite, and hopefully reasonably kind and sensitive to the people we meet. As part of this process we may notice that they appear upset, or anxious, or cross, and we may tailor our words and deeds to their manner to some degree, but it is not generally part of our brief to do more than that. Everything depends upon our relationship with them, and the circumstances under which we are meeting. Are

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they friends or strangers? Are we in a bus queue or in a self-help group? The same applies within health care settings: just because we are in a professional role and are practically caring for someone, it does not follow that we should be paying any special attention to their specific emotional or psychological needs. Most importantly, they may not want that sort of attention; in addition, it may not be a fitting part of the task in hand. The ‘emotional labour’ required may be fairly circumscribed. Someone who is taking blood samples from a series of patients in a waiting room needs to be able to be as reassuring and as gentle as possible, while doing their job effectively and efficiently. It is also useful to be able to recognise, and to be patient with, individuals who are unusually frightened of that procedure. But it would be completely out of place for them to strike up a conversation about the patient’s deeper worries. What is fitting will thus depend, amongst other things, upon (a) what the individual person needs and wants; (b) the nature of the professional role; (c) whether the relationship has a history and/or a future; and (d) the particular characteristics and personal styles of the two people involved. Furthermore, ‘emotional labour’ rarely occurs on its own, and this makes even greater demands. Most of the time when we are caring for someone, we are doing something practical or technical. As a necessary part of these practical interventions, we will have regard to emotional matters. We may choose to comfort someone physically, or to listen to their point of view, or provide some occasional companionship, but in order to do these things well we often need to be fully engaged with the whole of their care. If we are listening to someone who is about to be discharged home and is concerned about how they are going to cope, it helps if we have some insight into what they are saying (and in turn this may involve a knowledge of their clinical condition, their medication, their attitudes, their family, home services, etc). This is not necessarily because we are in a better position to do something about their concerns (although we may be) but because we are better able to listen, better able to hear what they are saying and to understand it. Sometimes people just need attention and recognition, but often what they really

value is ‘informed attention’. It is this compound of technical and emotional expertise that is so characteristic of health care and particularly of nursing.

Supporting care Until now I have concentrated on the difference that individuals can make, but it is not all a question of individual responsibility. In many respects individuals can only do what circumstances allow, and we all require the support of each other and of the right policies and cultures. There are some deep philosophical and practical questions raised here, which I will pass over very quickly. First, it is very difficult to separate out individual and collective responsibility. The debate about criminality is a familiar one – how far, and when exactly, should we hold individuals responsible for a crime rather than seek explanations in the various pressures and contexts that help to shape them? It is broadly the same debate with virtues as with vices. In professional roles we should certainly expect that individual practitioners will be motivated not to fall below certain minimal standards of practice, but can the wider society expect them to be motivated to aspire to, and strive for, ideals of best practice? I would argue that the latter is an unrealistic expectation unless a good deal of thought and effort is put into creating supportive contexts for professional work. This takes us on to a second set of puzzles, i.e. what counts as a ‘supportive context’. Commentary 2.4 In this final section I am trying to correct a possible overemphasis in the previous discussion. What I have called personal knowledge is essential but it cannot stand on its own. It is no good simply saying that everyone should ‘pull themselves up by their own boot straps’, and miraculously develop the caring virtues. We need to think hard as a society (and institutionally) about how we can support each other’s development. We need to understand more about personal knowledge and ‘emotional expertise’ in particular. I think it is partly about putting these discussions firmly at the top of the agenda along with other important topics such as budgets, etc.

Knowledge and caring: a philosophical and personal perspective 25

I will not try to solve these puzzles in this chapter (nor could I!) but I will try to suggest some factors that need to be borne in mind. These questions about fashioning the context of professional work can draw upon a variety of forms of knowledge. There is a lot of relevant work in management studies, organisational theory, economics, social psychology, social policy, sociology, and so on, as well as practical expertise relating to leadership or team working, etc. But, as always, it is vital that those who are developing or applying these forms of knowledge are asking the ‘right questions’. It seems to me that all too often those voices that are most influential in policy making neglect important questions. Efficiency and health gain are most important but we also need to ask ‘How can institutions and cultures be developed in ways that underpin and that foster “caring expertise”?’. Health care is about health and care, and it is foolish to assume that these two are the same and that whatever delivers one will deliver the other. (Of course, some people may wish to develop the argument that at some level these two concepts converge in important ways – but that is a different matter.) There are two related sets of reasons for this relative neglect of caring: • a policy climate increasingly dominated by ‘outputs’, the language of audit and the use of performance indicators, which by their very nature are reductionist • the ambiguities and complexities surrounding the notion of caring, which make it difficult to have a confident public debate about, let alone to accommodate this debate to, an ‘outputorientated’ policy climate. Both of these sets of reasons are worth attending to and I will say a little more about the relationships between them shortly. But on this occasion I have concentrated more on this second set of reasons. I am conscious of the difficulties of treating caring with due seriousness. It is all too easy to retreat into sentimentality or wishful thinking, and to deal in vague generalisations. We are inclined to see it as a question of instinct or intuition, perhaps something it is counter-productive to theorise about (rather like humour). I think

there is a lot to be said for this attitude; there is a limit to how far we should, as individuals, be selfconscious and analytical about dispositions and skills that need to become ‘second nature’ if they are to be truly effective. But I believe we do need to be self-conscious about these questions as citizens, or as professional groups, and to ask how we, collectively, can create conditions under which this particular embodied form of knowledge can be acknowledged and nourished. One issue that can be used to illustrate this sort of question is the use of time. It is a crucial issue because underlying the output-orientated culture is the imperative to allocate public resources efficiently. The time of health professionals is, in every sense, the most valuable resource of health services and is itself necessarily rationed. Anyone who has visited their general practitioner (GP) will understand how time creates certain caring possibilities. There is a limit to what can be done in a 5–10-minute consultation. A GP, especially if they are of a holistic persuasion, may well ask about your home or work circumstances – are you under stress, or do you have specific problems that are keeping you awake? They may also ask about your diet, exercise patterns, and so on, and they will have to consider whatever condition or concern brought you there in the first place. All of this is good practice and may well throw up important clues to improving your health. But the time pressures on the consultation will powerfully shape the structure and the ‘feeling’ of the interaction. The process will nearly always be informed by the move towards some ‘intervention’ on the part of the GP, whether it be encouragement, advice, treatment, or referral. Two things will rarely be possible: (a) the doctor simply listening to an extended account of this range of life-related problems, prompted by their questioning; and (b) a careful negotiation of a shared understanding of some of these factors. Yet both of these things can be, depending on the case at hand, vital foundations for certain forms of caring. This shortcoming is not necessarily a problem – the limitations on these particular consultations are widely understood and accepted. But if, under budgetary pressures, a predominantly instrumental style of interaction increasingly comes to be seen as the appropriate

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model of personal interaction across a range of settings, the potential for caring relationships in professional health services will be greatly diminished. There are many other things we need to understand in more depth. For example, what sorts of professional support enable different practitioners to sustain person-centred caring over years? How can we effectively encourage practitioners to find their own style of ‘emotional expertise’ and to know when they are at the limits of their competence? How can we create settings with the right balance of generalist and specialist ‘emotional expertise’? Above all, how can policy making give proportionate emphasis to both technical and person-centred facets of care, and to both ‘health gain’ and caring processes? The first step to a better understanding is to ensure that we give proper respect to, and consideration of, the whole range of forms of expertise that people possess. We should not take caring for granted; we should not assume that we understand it, we should not treat is as a fixed ‘natural resource’ that can be deployed in any set of circumstances. It is a precarious and priceless form of knowledge.

Postscript I do not really want to say anything about my mum’s death or dying. It still seems too private to talk about (especially in such a public place). And I certainly don’t want to imply that there is some kind of wisdom, some kind of caring, that could ‘make it right’. Suffering cannot be denied. But, of course, there are also good things and gratitude. All of those people who supported her, and us, through the upheavals of her last few years did something immensely precious. Friends, neighbours and colleagues spring to mind, but so do people who were once strangers, people who were ‘just doing their job’. There were mistakes, misunderstandings, insensitivities, and general clumsiness mixed up in all of this, but what should we expect? Human beings are pretty imperfect creatures and caring is such a demanding business. Care has so many faces, and serves so many ends, and different compounds are needed from instance to instance.

I am grateful for the technical expertise, for the people who listened or provided companionship, for those who understood the practical routines, for the kind touches, for the opportunities for laughter and for many other things. It seems to me – and I admit I’m biased – that both my parents were exceptionally brave and good during these ordeals (although of course they ‘failed’ too sometimes), and they were lucky to have each other and their family around. There is a limit to what ‘professional carers’ can do, and there is a limit to what can be expected of them. Yet, at the same time, within these limits there is scope for an infinite amount of good. At the thanksgiving service for my mum, as before and since, people celebrated her. They spoke about her gentle and sympathetic nature. In my opinion gentleness cannot be overrated, but I don’t see these good qualities as entirely passive or as just ‘natural’, such that they cannot be learned or practised. It seems possible for us to be more or less alive to other people’s needs. Our capacity for this may vary from time to time and according to many other factors. But some people seem to be very good at it. They are able to generate a powerful current of attention that places other people at the centre of things. This is how my mum’s friends and (albeit in different ways) her patients and acquaintances knew her and remember her.

Acknowledgements and further reading First, I would like to say thank you to my mum, Joan Ashton Cribb. Thanks are also due to a few close friends and colleagues who encouraged me to write this chapter and gave me helpful comments on it. There are other debts unacknowledged in the text; indeed, I do not claim any originality for what I have written. I have no doubt been influenced by many things, only some of which I could even bring to mind. One of the more conspicuous influences (to those with an interest in philosophy) is Gilbert Ryle’s discussion of ‘Knowing how and knowing that’ and subsequent work on the same theme (Ryle G. (1945). Proceedings of the Aristotelian Society XLVI, 1–16;

Knowledge and caring: a philosophical and personal perspective 27

Nyiri J.C. and Smith B. (1988). Practical Knowledge: Outline of a Theory of Traditions and Skills. London: Croom Helm.). There are plenty of references to work on ‘caring’ in other chapters but I have explicity drawn on two traditions of related work – virtue theory and work on emotional labour in health care (see for example, Pence G. (1984). Recent work on the virtues, American Philosophical Quarterly 21, 281–297; Smith P.

(1992). The Emotional Labour of Nursing. Basingstoke: Macmillan Press, Basingstoke). For those interested in thinking in greater depth about some of the issues raised in this chapter, I suggest a couple of possible starting points – Hollis M. (1994). The Philosophy of Social Science, an Introduction. Cambridge: Cambridge University Press; Oakley J. (1992). Morality and the Emotions. London: Routledge.

CHAPTER THREE

Cancer, care, and society Christopher Bailey

Cancer probably affects most of us in some way, directly or indirectly. We may, professionally or informally, provide care for someone who has cancer. We may have or have had cancer ourselves. Someone we know has probably had cancer. We hear about it, read about it, and see images of it. Cancer and cancer treatments are sometimes written about in our newspapers in terms that evoke images of war, weaponry, and violent assault. The chief executive of a major cancer charity, for example, is quoted as saying that tamoxifen is ‘an important addition to the armoury of therapies’ available to treat women with breast cancer;1 another drug is described as ‘targeting’ cell protein and ‘suffocating’ the tumour ‘to death’.2 An article from 2005 describes scientists as claiming to be developing a system to ‘kill cancer cells with a single blast of ultrasound’, and quotes a doctor as explaining that ‘the ultrasoundactivated bubbles target with single-cell precision so that the technique is like sniping at specific cancer cells’.3 The Sun newspaper reported that the breast cancer drug Herceptin (Genentech, Inc) ‘seeks out problem genes and locks onto them’ using monoclonal antibodies like ‘minirockets’.4 Another article from The Sun speaks of the ‘latest weapon in the war on cancer’ as ‘microscopic missiles which seek out and destroy tumour cells’: The futuristic treatment . . . mirrors the nano-bots used by the Borg in Star Trek: The Next Generation.

Tiny beads, called nanoparticles, bombard tumour cells with cancer killing drugs while leaving healthy ones unharmed . . . Depending on the type of tumour they’re targeting, the particles will latch on to the outside of cancer cells and stop them working, or penetrate the cells and destroy them. The Sun, 3 November 20055

The message behind this kind of language seems to be that cancer is such a formidable challenge that in order to confront it, we must draw upon the fighting spirit that sustains us, against the odds, in wartime, and upon our belief in the superiority of our technology and military power. There is another kind of message about cancer and cancer treatment in the media that is softer and less confrontational. This is that some treatments offer to prevent or protect us from cancer. Embryo selection, for example, although controversial, is seen by some as a possible means of allowing women with a history of breast cancer to have healthy children. So for some people, this is ‘good preventative medicine’, for others, it is part of a distasteful ‘quest for perfection’.6 Some cancer experts speak of the potential of lifestyle changes to achieve long-term control of cancer and make cancer ‘like diabetes’: More than a third of cancer deaths worldwide have preventable causes that could be tackled by changing people’s behaviour and their environment . . . The impact of smoking on several cancers is well known,

Cancer, care, and society 29 but alcohol use, unsafe sex, low fruit and vegetable intake, obesity, lack of exercise, contaminated injections and indoor smoke from fuels are also risks that could be reduced. The Guardian, 18 November 20057

Vaccination against cancer is described in terms that mirror the language applied to other forms of preventable disease: Vaccination against cervical cancer could become as common in schools as jabs against meningitis are now, following the dramatic results of the latest clinical trials. The Guardian, 8 October 20058

Perhaps what cancer stories in the media demonstrate is that in some ways we are moving away from a position of highest alert against cancer as a deadly and imminent threat, to a position that reflects greater confidence in our ability to protect ourselves, metaphorically speaking, without always being on the offensive. This must surely be a less frantic frame of mind for us, as a society, to be in. In some cases, we can see the two positions side by side, and perhaps this is a more accurate representation of where we are collectively. The same article that speaks of the possibility of creating a vaccine to ‘protect’ against human papilloma virus, for example, also refers to the possibility of treating cancer by teaching the immune system ‘to recognise the enemy within – and attack it before it causes potentially fatal disease’.8 ‘Cancer’ is sometimes applied metaphorically to situations outside health care, to express horror at the threat to some cherished, and previously vigorous and healthy part of society: Nigeria’s Anglican Church says that the US branch of the church is a ‘cancerous lump’ that should be ‘excised’. Nigerian bishops were responding to a proposal from the Archbishop of Canterbury Rowan Williams last week. He had suggested the introduction of a two-tier system of church membership to avoid complete disintegration over the issue of homosexuality . . . ‘A cancerous lump in the body should be excised if it has defied every known cure’, [the Nigerian bishops] say. ‘To attempt to condition the whole body to accommodate it will lead to the avoidable death of the patient.’ BBC News, 4 July 20069

In 1997 the Labour Party denounced the private finance initiative (PFI) as creeping privatisation. They asked senior doctors to sign a letter in which they described the internal market as a cancer eating away at the NHS . . . If the government does not heed the doctors’ warnings, the cancer they correctly diagnosed eight years ago will destroy the NHS. The Guardian, 27 June 200510 Frank Field yesterday launched the latest salvo in his post-resignation fightback with an assault on spin doctors, whose activities he called a cancer at the heart of the Government . . . He said: ‘Sadly, this whole episode shows the real need for that. In the long run, you cannot run a government like this. It’s a cancer that will eat away at the heart of our very existence and undermine the way ministers behave’. The Guardian, 4 August 199811

This is another side of the war with cancer, where cancer is attacking the healthy social body, as opposed to the physical body. Here, cancer is a moral threat, something unremittingly bad. For those whose lives are affected by cancer, the implication can clearly be that there is something bad about their lives, their loved ones, or them. Susan Sontag believed that cancer ‘is a metaphor for what is most ferociously energetic, and these energies constitute the ultimate insult to the natural order’ (p.72).12 It is, she suggests, a metaphor for what is not good and not right, for forces opposed to the flourishing and harmonious side of our lives. In health care, the ‘war against cancer’ goes on; but the importance to us of the idea of health extends beyond formal health care systems. If parts of society ‘have cancer’ they too might need treatment to put them right: the ‘cancerous lump’ must be ‘cut away’. Health and health care thus provide a model for maintaining order that applies not only to our physical selves, but also to ourselves as good citizens and to the good governance of our institutions. The importance we place on the ‘war against cancer’ reflects not only our desire to put our bodies right, but also our determination to keep ourselves and our communities in good working order. Cancer is part of the everyday lives of thousands of people, yet it often seems anything but

30 Cancer, care, and society

‘everyday’. Each day thousands of people learn, or realise, or suspect, or fear that they have cancer; they learn that their mother or father, or son or daughter, or wife or husband or partner, or friend, or neighbour or aunt, cousin, niece, or nephew has cancer. We don’t even have to have cancer to be frightened of it. Here, a researcher working with people with cancer is talking about her fears:13 When I started working with people with cancer (five years ago, and before engaging in my current work at this research unit) it was at the front-lines in more of a supportive role. For the first couple of months I had dreams that I had cancer and I would feel overwhelmed when I met roomfuls of people with cancer . . . the way that I think that most people think that cancer is the harbinger of death. It took me a couple of months to integrate the work and for the nightmares to stop [p.279].

Claudine Herzlich and Janine Pierret, French sociologists whose studies of illness are based on collections of personal experiences, refer to cancer as the ‘most frightening illness of all’.14 It is so frightening in fact that cancer is a word that sometimes cannot be spoken: a word that, if spoken, ‘condemns the sufferer’, as if by magic. In France, say Herzlich and Pierret, it is rarely publicly acknowledged that people have died of cancer; rather, they are said to have died after ‘a long and painful illness’. They record conversations that reflect the ‘quasi-magic image’ or the ‘phantasms’ of contagion, which affect both people with cancer and those who are not ill themselves. Despite modern pathology, which has transformed much of our understanding of illness, anxiety in our society still ‘crystallises’ around one ‘scourge’ of illness that is totally associated with death: cancer, according to Herzlich and Pierret, has become the ‘very embodiment of physical suffering’ for us.14 It is the ‘specific illness of our society’, ‘the illness of our time’, so dominant that it sometimes seems to be the ‘only illness’ (p.55). Cancer, they say, is the modern equivalent of the ‘age-old scourges’, and like diseases in the past, it is ‘fraught with phantasms of rot invading the body, and animals that gnaw and destroy it’ (p.56). They point to two ‘conceptions’ or themes in the aetiology of cancer, which illustrate how

cancer has become the ‘prototype’ of modern illness: One of them sees it as an illness of the individual, the other as a disorder of our way of life and of society. In fact . . . cancer is the illness of individuals in their relations with society. It is indeed an illness of the individual, but this individual can only be conceived of in relation with society as a whole. At the same time cancer is also an illness produced by society, but one that manifests the flaws of the present-day individual [p.62].

Cancer is sometimes seen as a development of certain psychological characteristics, such as repressed or anaesthetised feelings, resignation in the face of life, lack of self-confidence, or an inability to express energy, particularly sexual energy, freely. Deborah Lupton, for example, has drawn attention to the link made between breast cancer and suppression of anger and trying to be ‘nice’.15 The contemporary image of the ‘cancer personality’ is, Sontag writes, a ‘forlorn, selfhating, emotionally inert creature’.12 Herzlich and Pierret do not agree, however, that this ‘schema’ reflects the majority of people’s ideas of ‘cancer as an individual disease’.14 They emphasise instead that people see themselves as predisposed towards the disease (for example, because they have relatives with cancer), or as ‘favourable terrain’ for it. At the same time, people often believe that their environment determines their individual behaviour: the ideas of cancer as an individual illness and cancer as an illness produced by society (for example, by pollution) co-exist. Herzlich and Pierret conclude that cancer is experienced both as ‘timeless scourge’ and as part of the dangers of modern life:14 ‘Is cancer a part of myself, or does it come to me from the outside world?’ the sick person wonders [p.65].

In the UK, Clive Seale has written extensively on the impact of cancer in the media.16–20 Seale questions Susan Sontag’s view that the language of cancer in both popular and scientific culture is purely militaristic. He proposes that the language we associate with stories of personal experiences of cancer often uses sporting rather than military imagery. Words such as ‘fight’, ‘victory’ and

Cancer, care, and society 31

‘defence’, he argues, can have non-military connotations even if they refer metaphorically to a military context.16 Seale’s analysis of English language newspaper articles suggests that the language used in stories of personal experiences of cancer often refers both to sporting and military activity. Stories about people with cancer who have some sporting connection are also common. He argues that language with purely military connotations is probably more prevalent in reports of new cures and treatments than it is in accounts of personal experiences of cancer; but it is more appropriate, he says, to describe the language in personal accounts of people with cancer as ‘struggle language’:16 in which sporting connotations are evoked through the use of military metaphors. This relies on an underlying conception of sport as standing for a life and death struggle. The military arena, on the other hand, is less in tune with contemporary sensibilities, where the celebration of naked violence is often repressed as an illicit pleasure [p.325].

Seale asks us to consider whether there is any real evidence to show, as Sontag and others have argued, that war metaphors have a harmful effect on people who have, or who are concerned about, cancer.12,16 He suggests that struggle language may actually have an inspiring or supportive effect, and reminds us of those anthropologists:16 who have argued for the therapeutic value of rehearsing illness narratives in a public context [p.326].

Essentially, the argument here is that finding an acceptable way of telling the story of our cancer helps us to live with the illness:16 Sports stories allow cancer to be portrayed as a psychological and spiritual journey, with progression towards a satisfying resolution even where death lies at the end . . . [p.326].

Deborah Lupton, who has written on the representation of breast cancer in the popular press in Australia, makes a slightly different point.15 In her analysis, the use of phrases that emphasise the positive impact of fighting qualities on cancer survival ‘depict the stereotypical passive feminine role

as threatening to health’ (p.78). At the same time, because women who delay having children, for example to pursue a career, were identified as being at increased risk of developing breast cancer, this expression of female assertiveness was also made to seem dangerous. Women, Lupton suggests, were ‘blamed’ in press accounts ‘regardless of which role they chose to take’ (p.78): This discourse of victim blaming was central in press representations of breast cancer. In the face of this devastating and dread disease, the press sought to locate the responsibility upon individual women for changing their lifestyles in order to avoid developing breast cancer. The overwhelming message was that ‘women should do something to protect themselves’ . . . Women who failed to perform . . . recommended actions, press accounts implied, were irresponsible and neglectful of their own health [p.85].

Whether we experience cancer personally, as an individual who is given this diagnosis; or personally through a partner, friend, or relative; or personally, as someone whose responsibility it is to support and care for someone else who has cancer; whether we experience cancer indirectly, through the airwaves, on the screen, on the page, or on the billboard; however we experience it, we are almost always moved by it, and often we find ourselves feeling the need to respond, to shake off a mood, offer some form of help, or perhaps to avoid the subject altogether. It is difficult to see how we can avoid having some stance, some collection of thoughts and feelings, some mixture of the rational and irrational that is evoked by cancer. My own feelings about cancer and about working with people with cancer have changed over time. When I started out as a student nurse I found cancer a difficult illness, and what sticks in my mind is a feeling that I didn’t really know what it was, what kind of ‘disease’ or ‘illness’ it was. Caring for people recovering from abdominal surgery for cancer of the colon or rectum seemed to me, as a raw recruit to nursing, to be almost impossibly complicated. People’s bodies, after surgery, seemed so radically altered, pieced together, that I was quite disorientated. I marvelled at the dexterity and matter-of-factness of

32 Cancer, care, and society

more experienced nurses (who were, in reality, probably only recently or only just qualified). Cancer was a mysterious disease, and treatment sometimes left people scarred or permanently altered, bowel rerouted to the abdominal wall and protruding discoloured into a large bag. Yet over time, with support from others, a sense of being orientated again, and of the wholeness of people, together with a consciousness of the effects of illness and surgery, returned, though it is probably true to say that a sense of the impact (or collision) of illness and treatment in cancer has remained with me. It is, overall, a feeling I welcome, because it is an incentive not to accept the status quo, a powerful message that we must always question whether accepted or ‘normal’ practice serves the interests of those who require health care. Cancer, and sometimes treatment for cancer, can appear to elbow out the person at the centre who is experiencing it; it can be so intimidating, and cause such physical and mental upheavals. The treatment we provide for it is sometimes traumatic, and the feelings it evokes can weigh heavily on us. I wonder sometimes how those more experienced nurses worked with such composure. Was it the composure of confidence or understanding, or did it sometimes include a kind of detachment? Do we sometimes push our feelings about a disease like cancer to the back of our minds? How often have we said, or heard our colleagues say, that if you thought about it all the time, you couldn’t do it, almost as if this was a necessary skill for the job? But, don’t we all ‘think about it’ a lot as well? Thinking about it, about cancer, about how it affects people, how it affects us, about how, as a society, we respond to it, both in health care and more widely, in the media, across the dining table, may be vital to understanding. But thinking alone, about such a strange and difficult thing as cancer, may not take us far enough. Talking about it, with our colleagues, our family or friends, with the people we care for, may take us further if we can do it reciprocally and supportively. Indeed, dialogue may be one means of creating the mutual support and the opportunity to express ourselves that we need to be able to understand cancer, our feelings about it, and what we want to achieve professionally. Without this further mutual, exploratory dimension, how easy is it to review

and build upon the joys and sadnesses of the day’s or the week’s events? Hochschild writes of our ability to reflectively assess when a feeling is inappropriate and to manage or to work on our feelings.21 This ‘emotion work’ is different from emotion control or suppression, which, Hochschild suggests, imply an effort to stifle or prevent feeling. Emotion work means shaping as well as suppressing our feelings; it involves invoking desired feelings that are not initially present. Hochschild speaks of ‘emotion– work systems’, in which dialogue with others – friends, perhaps – assists the process of working on or shaping our feelings; and of being conscious of a moment of ‘pinch’ or discrepancy between what we feel and what we want to feel.21 The purpose of working on our feelings is to eliminate this ‘pinch’. In nursing, some theorists have used similar ideas to describe reflective practice. Chris Johns, for example, has written a series of papers and books on the theme of enabling practitioners to learn through reflection on experience.22–29 By reflecting on experience, Johns believes, we can begin to see the contradictions between the way we think, feel and act, and the values we aspire to in our practice. For him, reflective practice is a way of exploring new ways of acting to realise our values in reality.29 Reflection, says Johns:24 offers practitioners a window to look inside themselves and know who they are as they strive towards understanding and realizing the meaning of desirable work in their everyday practices. The practitioner can expose, confront and understand the contradictions between the way she practices and what is desirable. It is the commitment to achieve desirable work that empowers the practitioner to take action to appropriately resolve these contradictions [p.1137].

To achieve this, Johns has developed and repeatedly refined a model of structured reflection. Practitioners are introduced to structured reflection through a ‘constant process of analysing supervision dialogue’, in the course of which they are given the opportunity to:22 tell their stories of practice and . . . identify, confront and resolve the contradictions between what the

Cancer, care, and society 33 practitioners aim to achieve and actual practice . . . [p.230].

The practitioner is encouraged to reflect on his or her experience with a supervisor who helps to direct the process of exploration and is available during difficult or painful issues. Johns uses the example of supervision dialogue between himself and Caitlin, a team leader on a medical ward, to illustrate the practical applications of structured (or guided) reflection.23 Supervisor and practitioner discuss the care provided for Ray, who has a meningioma. Ray’s drug therapy has been discontinued, and as things stand he will soon die, though not at home, as a decision has been taken to keep him in hospital. The dialogue focuses on the question of why Ray has not been asked to participate in the process of reviewing his care, whereas his wife, Lucy, has. Johns, the supervisor, introduces some ideas about dying people and their need to communicate, which, he says, produce an ‘a-ha’ moment for Caitlin, an ‘opening of shutters’. Caitlin takes the decision to be much more open with Ray about his care and treatment, and to engage more closely with his wife Lucy’s feelings of unhappiness. Doing so enables Caitlin to facilitate the saying of goodbyes between Ray and Lucy. Johns comments:23 Choosing to give herself to these people is a momentous leap of faith for Caitlin, a metaphoric cocktail of emotions that were difficult to manage and threatened to sweep her away. Perhaps it would be easier for her to remain detached and task-focused so she does not have to concern herself with these issues. Yet, she can no longer do this within her concern for this family and her beliefs about caring [p.37].

For Johns, ‘remaining available’ or ‘true presence’ is at the heart of caring: Caitlin’s ‘leap of faith’ is her decision to become more fully open to Ray and Lucy’s experience – to ‘open the shutters’. Johns’ account of his encounter with Tom, who has Parkinson’s disease, shows something of what being ‘available’ can mean:26 He loved his shave. His happiness was for me to take ‘Murray Mints’, his gift back for my attention, my respect and kindness. In seeking to connect with me, he needed to give something back. By accepting I could honour this need and he could honour himself.

We began to tune into a reciprocal relationship, where I could respond with an appropriate level of involvement with Tom. In this way I synchronized our rhythms of relating to each other at this moment. In tune with him, I was most available to him. I was conscious about how I paid him attention that responded to his feelings and needs, which had made him so happy that morning when he had been so miserable [p.20].

Being ‘available’, Johns believes, is a ‘key therapeutic role’ (p.22).26 For Benner and Wrubel, ‘involvement and caring may lead one to experience loss and pain, but they also make joy and fulfilment possible’ (p.3).30 And yet, as Johns acknowledges, there are forces that ‘squash’ or ‘minimise’ caring values.24 The low status and lesser rewards of nursing relative to medical practice, for example, may have led nurses to adopt the values of the dominant group. Caring, it is feared, may have been reduced to a subculture, and it is for this reason that effective means of creating the conditions under which caring beliefs can be realised are urgently needed.22 It is within the context of this ‘minimisation of caring values’ that Johns seeks to develop reflective practice, and to establish it as an engine for the regeneration of care. Caitlin, we must remember, must be well supported to enable her to take the steps she does.23 She has ‘contracted’ to meet her supervisor for one hour every three weeks; between meetings she keeps a reflective journal, in which she records her experiences and her responses, guided by a series of ‘reflective cues’. Like Benner and Wrubel,30 Johns believes it is a mistake to think that caring is the cause of ‘burnout’ and that we should therefore ‘protect’ ourselves from caring, as if it were a threat:30 Rather, the loss of caring is the sickness, and the return of caring the recovery . . . Although disengagement may numb pain, one is also numbed to the resources and support of others in the situation. Recovery requires rest and respite, but it also requires the reintegration of concern and involvement [p.373].

Rather than seeing caring as the cause of stress, we should hold institutions and systems responsible if they fail to provide the means of

34 Cancer, care, and society

developing and sustaining caring practices.22 Johns explains:23 However profound this process of becoming may seem, it is dependent on the supervisor being available to work with the practitioner. My key role was to balance high challenge with necessary support, so Caitlin did not feel threatened, which would inhibit learning. This was helped by establishing our therapeutic working relationship over several months. How I interpret and respond to Caitlin was a role model of ‘being available’ for her patients [p.38].

Johns supports and is ‘available’ for Caitlin through the process of guided reflection in the same way that she is becoming ‘available’ for people like Ray and Lucy, in a supportive and exploring therapeutic relationship. It is over 40 years since Isabel Menzies published her famous paper on the organisation of the nursing workforce in a London teaching hospital.31 Some, myself included, would argue that it still has the power to influence our understanding of the forces that shape the way that nurses work. Menzies believed that the nurses she studied were organised collectively (or socially) in a way that suggested they were trying to defend or protect themselves from anxiety. Menzies, who was working for the Tavistock Institute of Human Relations in London, was asked for help by the hospital in a project to facilitate organisational change within its nursing service. Trained nurses were, she says, employed to a large extent in ‘administrative, teaching, and supervisory roles’, while the student nurses were ‘in effect, the nursing staff of the hospital at the operational level with patients’ (p.44).31 She describes a situation in which the demand for care within the hospital was such that staffing needs took priority over training needs. The researchers from the Tavistock Institute set about exploring this situation by conducting a series of interviews with nurses, medical and ‘lay’ staff, and by carrying out observational studies in clinical areas. Over and over again the researchers encountered such high levels of tension, distress, and anxiety among staff that they found it hard to understand how individuals were able to tolerate it. In fact, Menzies reports, there was a great deal of evidence to suggest that nurses were not able to tolerate

such anxiety, and, ‘in one form or another, withdrawal from duty was common’ (p.45). Menzies explores the nature of the anxiety she believed she had identified in the nurses in this study from a psychoanalytic perspective; and more than 40 years on, her powerful account still thoroughly merits re-reading. Nurses, she says, are: . . . in constant contact with people who are physically ill or injured, often seriously. The recovery of patients is not certain and will not always be complete. Nursing patients who have incurable diseases is one of the nurse’s most distressing tasks. Nurses are confronted with the threat and reality of suffering and death as few lay people are. Their work involves carrying out tasks which, by ordinary standards, are distasteful, disgusting and frightening. Intimate physical contact with patients arouses strong libidinal and erotic wishes and impulses that may be very difficult to control. The work situation arouses very strong and mixed feelings in the nurse: pity, compassion, and love; guilt and anxiety; hatred and resentment of the patients who arouse those strong feelings; envy of the care given to the patient [p.46].

Nurses, in particular, must: allow the projection into them of such feelings as depression and anxiety, fear of the patient and his illness, disgust at the illness and the necessary nursing tasks. Patients and relatives treat the staff in such a way as to ensure that the nurses experience these feelings instead of – or partly instead of – themselves . . . Thus, to the nurses’ own deep and intense anxieties are psychically added those of the other people concerned [p.49].

The extraordinary context in which nursing takes place affects us in very powerful ways. The very nature of caring for seriously ill or dying people evokes feelings so strong that they may shape the pattern of work in ways of which we are only partly conscious. In other words, we may organise our care in the way we do to minimise the impact of the situation on us, restricting what we do rather than expanding and exploring the possibilities of care – what Johns might describe as ‘squashing’ caring values.24 Menzies argues that a social organisation such as the nursing service in a hospital develops a mode of functioning that is influenced by a

Cancer, care, and society 35

number of interacting factors. These include the organisation’s primary task, the technologies available for performing that task, and the needs of the members of the organisation, particularly their need for social and psychological satisfaction and for support in the task of dealing with anxiety. This need, Menzies believes, is especially important.31 To an extent, indeed, the mode of functioning of a social organisation may be determined by the psychological needs of its members (p.50). The way we care for people with cancer could be shaped or determined, that is to say, by our experience of cancer and the feelings that flow from it. Anxiety, as well as positive, constructive feelings, are part of our experience of caring, and from time to time might lead us to pull in our horns on a personal level and circle the wagons on an organisational level, in an attempt to protect ourselves from harm. Chris Johns’ guided reflection is, in effect, a way of helping us to manage the experience of caring for people constructively, a way of providing the support we need to avoid ‘pulling in our horns’, or ‘putting up the shutters’ in situations where issues and feelings seem just too intimidating. Isabel Menzies31 argues that when members of an organisation are struggling against anxiety, defence mechanisms develop and become part of the organisation. For example, if a nurse experiences anxiety as a result of the closeness and intensity of her relationship with people under her care, the nursing service: may attempt to protect her by splitting up her contact with patients. It is hardly too much to say that the nurse does not nurse patients. The total workload of the ward or department is broken down into lists of tasks, each of which is allocated to a particular nurse . . . This prevents her from coming effectively into contact with the totality of any one patient and his illness and offers some protection from the anxiety this arouses [p.51].

The feelings we experience in nursing, unmanaged and unsupported, may cause us to limit our contact with people, or to avoid certain difficult aspects of our relationships with the people we care for in our work. In a more recent language of caring, we are not ‘fully present’ or ‘available’. Some recent research in nursing has suggested that

the idea of being fully ‘present’ or ‘available’ in caring situations is an idealisation, even fantasy, of what caring can actually be, and that it might be more realistic for nurses to aim to be ‘good enough’.32 Other research in palliative care has pointed to the way in which the notion of a ‘good death’ may be interpreted, in practice, as a ‘good enough’ death, with the emphasis on routine medical practices and a prioritisation of physical aspects of symptom management.33 It is interesting to reflect on the extent to which the need to protect ourselves is still a factor in the way that nursing is organised today. How much of nursing is a ‘social defence system’ established to help us avoid certain difficult feelings? And how may nursing change if our need for such strong defences were reduced by more supportive structures, by ‘conditions where caring becomes possible’?23 Menzies concludes that in the institution she studied:31 The characteristic feature of the social defence system . . . is its orientation to helping the individual avoid the experience of anxiety, guilt, doubt, and uncertainty . . . the potential anxieties in the nursing situation are felt to be too deep and dangerous for full confrontation, and to threaten personal disruption . . . In fact, of course, the attempt to avoid such confrontation can never be completely successful [p.63].

In her opinion, ‘true mastery’ of the feelings evoked by nursing is most likely to be achieved by ‘a deep working-through’ of intense situations, a theme familiar to us today, though it may be couched in terms of caring ‘visualised and realised through guided reflection’.24 Benner and Wrubel describe caring as the producer of stress and coping with the lived experience of illness.30 They explain that this is because what we care about matters to us and therefore is a potential source of concern to us; at the same time, if we care about something it means something to us, and we therefore commit ourselves to it and involve ourselves in it. This lays the groundwork for coping. Nurses, they say, ‘help patients to recover caring, to appropriate meaning, and to maintain or re-establish connection’ (p.2). ‘Making contact’, or understanding the ‘lived experience of illness’ is at the centre of their

36 Cancer, care, and society

account of nursing: it is this principle of openness to others that empowers nurses to grasp the ‘daily consequences’ of illness, to ‘convey acceptance and understanding’, and to work with ‘thoroughness and attentiveness’(see Benner and Wrubel,30 Chapter 1). Like Chris Johns, Benner and Wrubel see the ability to be present in the special sense of being accessible and connected as the foundation of nursing as a caring occupation. In their example of ‘presencing’, a clinical nurse specialist, Mary, describes an interaction with Dave, who has lung cancer:30 He was yelling that he wanted everything packed up. I felt a panic among the staff . . . I went into his room and he yelled at me: ‘Are you listening?’ I said yes pretty calmly, and he began crying softly and talking. He knew I was listening [p.15].

Mary explains that it is because she is not ‘walking out of the door as she walks in’ that her relationship with Dave is right; we might say that this is a way of describing ‘making contact’, or ‘being accessible’. Benner and Wrubel30 explain that it is this ‘presence’ that makes all the caring, nursing processes that Dave needs from Mary possible. As Mary says: . . . during the following weeks we spent some intensive time going over what needed to be accomplished . . . We began concentrating on his issues: chemotherapy at home, volunteers coming into his house, pain management. It was great, because with support he made the most of his time [p.15].

In Anguish, the American sociologists Anselm Strauss and Barney Glaser describe the hospital care and treatment of one woman with breast cancer (‘Mrs Abel’).34 They introduce for the first time the theory of ‘dying trajectories’, which can be used as a way of interpreting situations in which it is acknowledged that an individual is going to die. Because the length of time it takes for someone to die varies, as does the certainty with which we can say they will actually die at a specified time, there are a number of possible dying ‘trajectories’. A trajectory, Strauss and Glaser explain, ‘has shape: it can be graphed. It plunges straight down; it moves slowly downward; it vacillates slowly . . .’ (p.12).34 Dying trajectories

are, they emphasise, what is perceived to be the course of dying, and may depart from the actual course of dying. They suggest that dying trajectories are an important part of the life of health care institutions: some areas, intensive therapy units for example, are, they say, ‘quick dying wards’; others, like the oncology unit, are ‘lingering wards’. Crucially, the number of deaths characteristic of a particular ward or unit, and the speed with which deaths characteristically occur, are factors that play a part in shaping the way in which nurses and doctors organise their work. Mrs Abel, like other people with advanced cancer, was seen as having a ‘lingering dying trajectory’, a long-term course of dying in hospital: death is acknowledged as certain, though the precise point in time at which it will occur is not known. So the shape of her trajectory was ‘of long duration’ and moved ‘slowly but steadily downward’ (p.1). Strauss and Glaser describe how on Mrs Abel’s floor staff saw terminal care as ‘work’, and found the physiological and psychological care of Mrs Abel ‘distasteful’ (p.6). They preferred to concentrate on people who were getting better, or who were dying less difficult deaths. Dying patients, they say, could ‘unwittingly compete with other patients for attention’: Mrs Abel, for example, ‘continuously wished to talk . . . no matter how pressed they were’ (p.7). Work on the floor had many important ‘temporal features’ (p.6). There were schedules for feeding patients, bathing, turning in bed, dispensing drugs, administering tests, close observation, and giving treatments. In fact, say Strauss and Glaser, ‘the total organisation of activity . . . during the course of dying is profoundly affected by temporal considerations’ (p.9). The story of Mrs Abel ties together an interest in ‘temporal features’ with another aspect of the organisation of care. Some aspects of care are termed ‘non-accountable’, which means that nurses and doctors have ‘considerable freedom’ or ‘latitude’ in these areas, and do not feel obliged to report, or account for how tasks or procedures are carried out (p.10). Strauss and Glaser feel particularly strongly that ‘social psychological aspects’ of care (relationships, for example) fall into this category. Because psychosocial care is ‘nonaccountable’, it is ‘unnoticed’. As such (and this

Cancer, care, and society 37

is what happened in Mrs Abel’s case), psychosocial care can be allowed to ‘disintegrate’ (p.10). The temporal dimension is vital to any hospital situation because it is a fundamental tool in the organisation of care. We effectively shape the care we give through our use of time. So when the time we spent on something is ‘non-accountable’ the consequences can be profound. Because the time we spend on psychosocial care is not recorded or accounted for, say Strauss and Glaser, even if we spend less and less time on it, it is unlikely that it will be noticed or that anything will be done to halt the consequences. Unaccountable aspects of care can simply disintegrate without our noticing it. There are several factors, according to Strauss and Glaser, that change the way in which care is shaped and organised. Diagnosis and prognosis, a person’s illness status, nurses’ expectations are, they feel, particularly important influences. Care is disrupted, becomes problematic, when expectations (for example, ‘approximations’ of patients’ dying trajectories) are not fulfilled. Patients are ‘expected to die on schedule’ (p.16), and ‘when progress turns out to be unusual, personnel may experience a disquieting feeling of having missed certain steps . . . miscalculations can play havoc with the organisation of work’ (pp.17–18).34 The picture of nurses and doctors we get from Anguish is of a group of people whose peace of mind depends upon their ability to predict key events; the last thing we might expect is for one of them to make a ‘leap of faith’, like Caitlin in Chris Johns’ account.23 But the staff in Anguish are not so different from the nurses in Isabel Menzies’ study, who sought refuge from the powerful emotions evoked by illness in detachment from their work and from each other. We all, like Caitlin, need a mentor to throw our most difficult feelings about nursing at, and a place to rehearse difficult, unfamiliar nursing ‘moves’. Mrs Abel, the central figure in Strauss and Glaser’s account of medical and nursing care,34 provides a powerful example of how the image of ‘the patient’ can be constructed. For the researchers Mrs Abel is ‘a case’, upon which theory is grounded. And while it would be unfair to say that she is treated as if she were part of a laboratory experiment, she is the object of inquiry or inves-

tigation, not a participant. She is not invited in, or given a footing in what is essentially her story. Unlike the participants in Chris Johns’ accounts, Mrs Abel is not seen as a primary source of knowledge about her situation: rather, it is the researchers who know, and who exercise powers of analysis and illumination. In a similar way, according to Strauss and Glaser, Mrs Abel is seen by her nurses and doctors as having a certain range of behaviour open to her, and her illness is seen as having certain parameters, a certain scope, within which to unfold. When her behaviour takes a different course, or her illness unfolds in seemingly inexplicable ways, sanctions are imposed in an attempt to re-establish the familiar pattern of life on the floor. Mrs Abel is ostracised, bullied, cajoled, and ultimately, it seems, operated on in an attempt to restore order. As long as she remains a particular kind of ‘patient’, her behaviour and her illness will receive (one imagines) dutiful medical and nursing care. If, like an unruly actor, she departs from her script, every effort is made to persuade her to return to it. It is as if illness and illness behaviour are subject to a kind of contract, agreed between the most powerful members of a group, which stipulates that it is okay to act in certain ways, but not in others. A cancer like Mrs Abel’s isn’t usually associated with the kind of pain she says she is experiencing, so crying and monopolising people’s time in the way she does is not what she should, as a good patient, do. For the nurses and doctors on Mrs Abel’s floor, there is something insubstantial or unconvincing about the pain she describes, and something outrageous, even offensive, about her behaviour, because her mode of experience does not follow the anticipated and legitimate path. Of course, the idea that there is such a thing as a socially sanctioned role to be adopted when we are ill is not new. In The Social System, the American sociologist Talcott Parsons gives his famous analysis of medical practice.35 He sees health as a ‘ubiquitous practical problem in all societies’ but points out that the influence of ‘the therapeutic process’ extends beyond health to ‘problems of deviance and social control’ (p.429). Medical practice is theorised as playing a part in the maintenance of balance in the social system as a whole. When we

38 Cancer, care, and society

are ill, Parsons argues, we are unable to perform our social roles effectively. But because illness is not something that just happens to us willy-nilly, but also something towards which our unconscious may for various reasons impel us, it is also a factor in the functioning of the social system in the sense that it is part of our (consciously or unconsciously) willed (or ‘motivated’) interactions. There is a dimension of motivation to illness, so that:

1. the sick person is exempted from ‘normal social role responsibilities’ 2. the sick person is in need of care and cannot make him or herself better 3. there is an obligation to want to get well 4. there is an obligation to seek help from a competent (that is medical) practitioner.

given exemption from normal responsibilities. The sick role is seen as involving not just exemptions but privileges, and Parsons argues that this may motivate individuals to attain or to sustain the status of sick person.35 From the point of view of the social system it is imperative that the sick person is ‘motivated’ to recover; as Parsons sees it control of the motivational balance, tipped in order to favour as efficient and brisk an exit from the sick role as possible, rests in the hands of the medical establishment. Perhaps, in Mrs Abel’s case, we can see legitimation faltering and the sick person’s exemption from responsibilities losing its effect. Because the power of legitimation is exercised one-sidedly, Mrs Abel cannot herself establish that her pain is real. She steadily loses both credibility and respect in the eyes of the majority of her carers. Parsons’ interpretation of the role of medical practice in the social system acknowledges the controlling role of medical practitioners in the health care system; the ‘sick role’ is identified as abnormal or deviant, with the sick person potentially motivated to remain formally designated as sick. In effect, this interpretation of the sick role establishes inequality as a principle of health care and in so doing leaves medical practice and the general public on opposite sides of a conflict of interests. Parsons’ concept of the patient’s role belongs to a branch of the sociology of health and illness known as functionalism. Functionalism, in contrast to some more contemporary perspectives, sees relationships in health care as having been achieved through consensus, and the stance of medical practitioners towards their patients as both benevolent and directive at the same time. Lupton points out that in the functionalist model the relationship between doctor and patient is characterised by a preponderance of power in the hands of the doctor, but is not seen as conflicted: rather, the imbalance of power is seen as a necessary addition to medical knowledge, allowing medicine to exercise its benevolent function (p.7).36 She comments, citing Turner:37

Crucially, the medical practitioner is seen as exercising a power of ‘legitimation’; that is to say, the medical practitioner determines whether the ‘sick person’ is legitimately sick enough to be

While Parsons’ work was ground-breaking in elucidating the social dimension of the medical encounter, the functionalist perspective has been subject to criticism based on its neglect of the potential conflict inherent

it becomes not merely an ‘external’ danger to be ‘warded off’ but an integral part of the social equilibrium itself. Illness may be treated as one mode of response to social pressures, among other things, as one way of evading social pressures. But it may also . . . have some possible positive functional significance [p.431].

Parsons claims that illness is a departure from normal functioning both biologically and socially. Illness changes us biologically, but it also changes our sense of ourselves in relation to others. According to this particular sociological interpretation, medical practice provides the social system with a means of coping with illness that is achieved through the adoption of a series of defined and established roles. The principal roles in question are the medical practitioner, and the ‘sick person’. The medical practitioner’s role is ‘collectivity oriented’, and above all requires a high level of technical competence. He or she is an ‘applied scientist’, setting aside personal likes and dislikes when making a judgement, striving for neutrality and objectivity (p.435).35 Parsons identifies four groups of expectations associated with the ‘sick role’ (pp.436–437):

Cancer, care, and society 39 in the medical encounter. Critics argue that the functionalist position typifies patients as compliant, passive and grateful, while doctors are represented as universally beneficent, competent and altruistic [p.7].36

In our encounters with medicine and health care we are expected to behave with self-discipline. In addition to attending to our health care needs (narrowly defined), medicine and health care are a training ground for good, orderly citizenship. The self-discipline we express as advocates of healthy behaviours has a broader significance in the maintenance of a ‘healthy’ society through co-operative productive endeavour and the acceptance of benevolent power inequalities. As Herzlich and Pierret have pointed out, medicine is not simply ‘one institution among others’ (p.190); rather, it is a model for all present-day social institutions and therefore has a profound effect on our experience of our place in society.14 By the end of the 19th and the beginning of the 20th centuries, they argue, the medical practitioner had come to represent science and its power, and medicine had claimed the right to determine the rules that society should follow. In support of this argument, they point to examples of medical regulation of sexuality, early childhood, and the relationship between health, the environment, and social conditions. Today, they argue, we are ‘firmly entrenched’ in the age of medicine, and all practices involving the body ‘assume meaning in relation to medicine’ (p.193): seeking medical care has become the norm and getting well is an obligation. Our tendency towards ‘total adherence to the positive value of medicine’ and ‘the need to submit to it with complete docility’ (p.195), mean that:14 the physician ‘knows’; he alone is in a position to state an opinion that can be considered the truth about the condition of the sick. The latter feel separated from the knowledge of their bodies, but they believe that this knowledge is present in another person who, for that very reason, is authorized to speak and prescribe. The sick acknowledge themselves to be in the hands of others, objects of their knowledge and their action [p.196].

While Parsons interprets medical supervision in an entirely positive way, it has been argued that

our current relations with health care discourage us from reacting to illness in an autonomous way: we have become dependent on specialised interventions and have lost confidence in our own ‘recuperative powers’ and ‘biological adaptability’ (p.197).14 Herzlich and Pierret quote one interviewee to this effect:14 ‘One is being infantilized’, said a 25-year-old young woman . . . ‘In the relations with the nurses, you just feel completely infantilized. Above all, don’t try to speak about your feelings, or about your desires, or anything like that . . . just swallow your medications like a good girl, smile a lot, and especially don’t think that you know what’s good for you better than the nurse. That is to say: she always knows everything, you must blindly obey her and not say anything . . . just be there like a good girl’ [p.198].

It has become increasingly difficult, given the medical view, for us to attribute any positive values at all to sickness and death, though these experiences have in the past been given meaning by communal social events and practices.14 The professional medical viewpoint tends to define problems in its own terms, and medical practice can be seen as having a vested interest in controlling the nature and extent of the services it makes available. Thus, in effect, the lay perspective is set to one side and the physician–patient relationship becomes, contrary to functionalist teaching, inherently conflicted:14 as the specialization that defines the field of the physician’s intervention becomes more and more narrow [it] increasingly ignores the total reality perceived by the patient’ [p.200].

One important effect of sociological frameworks such as the social constructionism represented in writers like Herzlich and Pierret,14 Deborah Lupton,15,36 and Bryan Turner37 (in contrast to the functionalism of Talcott Parsons35) is to ‘problematise’ the doctor–patient relationship; that is to say, a critical space is opened up, which enables lay and professional participants in health care, as well as commentators, to set new goals beyond established orthodoxies. Social constructionism sketches out a rationale for the inequality and loss of autonomy experienced by individuals

40 Cancer, care, and society

involved in formal health care, but instead of endorsing it, interprets it as a rather one-sided exercise of vested interests. The autonomy (or ‘agency’) of the lay person, together with a reevaluation of his or her whole experience, is brought into view and identified as a necessary dimension of relationships in health care. The legitimacy of an imbalance of power, even attached to a rhetoric of philanthropy, is brought into question. Having said that, we should remember that Michel Foucault, the French cultural historian, recognised the medical dominance of doctor– patient encounters, but saw it as a voluntary and necessary arrangement:36 When discussing power in the medical encounter, the functionalist and the Foucauldian perspectives . . . overlap to some degree. In understanding power relations as productive rather than coercive, Foucauldian theory restates the assertion of classic functionalism that medical dominance is necessary for practitioners to take control in the medical encounter to fulfil the expectations of both parties, rather than a source of oppression . . . In this view, detachment, reserve, responsibility for the patient’s well-being and an authoritarian stance must be maintained by the doctor, and the notion of patients being ‘empowered’ to take control in the encounter makes little sense, for such a change in the relationship calls into question the reason why the very encounter exists [pp.112–113].

Beresford points out that the last 20–30 years have seen the emergence of new movements of welfare users, and that government has sought to incorporate and respond to these.38 New Labour, he argues, has highlighted ‘participation, partnership, and empowerment’ in social policy, but in reality: welfare users have had minimal involvement in welfare reform despite the significance attached to such reform and the massive impact it is having [p.501].

It is, he says, still unclear how the shift in power to patients and service users is to be achieved: The voices of disabled people, mental health service users and people with learning difficulties and older people are still largely marginal in social policy. One of the key developments in social policy in recent years

has been the recognition and inclusion of difference and the challenging of social divisions. This hasn’t happened for service users as service users. If social policy is . . . to reflect commitments to equality and inclusion, this has to change [p.507].

Fundamental questions remain to be answered if problems of bias associated with knowledge linked to services and policy are to be addressed. How, for example,38 can social policy, which doesn’t fully and equally include service users, resist accusations of institutionalised discrimination, bias and presenting a partial picture [p.509]?

Carolyn Featherstone writes of modern society as one in which the body is ‘an object of obsession’.39 In fact, the body is a ‘project’, a means through which we set out to achieve social or material ends. Cancer, though, disrupts the ‘bodyas-project’ through its power to stigmatise and fragment the image we have of our bodies both physically and emotionally. Featherstone draws attention to the role of writers like Michel Foucault and the symbolic interactionist Erving Goffman in providing a critical perspective on the notion of disease in Western culture. Naturalistic theories, which suggest that relationships in society (those between, for example, men and women, or different classes) are founded on the different strengths and weaknesses of our bodies, legitimise inequality because they deem such differences to be part of a natural and unchanging order.39 Social constructionism, in contrast, looks upon the meaning our bodies have for us as being determined by social structures and encounters with others. When our bodies are affected by disease in such a way that the flow of everyday encounters is interrupted, or if our bodies conflict with dominant social representations, the experience is traumatic and we feel stigmatised.39 Featherstone suggests that Michel Foucault’s development of the idea of ‘discourse’ (statements emanating from authoritative social groups that have the power to constitute reality of a kind) gives us the means to understand how medical practice is able to shape our sense of our bodies:39

Cancer, care, and society 41 ‘Discourse’ is a key concept in Foucault’s writings . . . ‘discourse’ is concerned with expert statements of powerful groups, i.e. statements which are taken seriously by a community of experts . . . we are talking about a mental model of reality, as used by expert groups. It will include the language, concepts and criteria of evaluation which are seen as legitimate for discussion of, for example, medical issues . . . The power of the medical profession is located in its discourse or ideas. Much of our thought about our bodies, then, is constrained by medical ideas which change over time [pp.166–167].

Our experience of our bodies in illness is constrained by medical discourse, which, though it changes over time, affects us as if it were part of a permanent order of nature, difficult, if not impossible, to resist. Holding on to a sense of our bodies as ‘us’ in the midst of intense medical discussion and cancer therapy is often beyond our means. We may be overpowered without being fully conscious of the loss (see Spence).40 Some sociological viewpoints have tended to see Western medicine in terms of its influence on (or ‘medicalisation’ of ) the body. Bryan Turner, for example, writes of medicine as a key institution in the regulation of bodies: the body is ‘socially constructed’, made real to us (or ‘fabricated’) through scientific discourses in medicine.41 Our bodies are controlled not just in health care but more widely in society through the exercise of medical power, which encourages us to exercise discipline over ourselves. The body, in this view, is ‘problematised’, can no longer be taken simply as a biological entity, and is seen instead more as a text, something written or laid down by powerful forces such as science or medicine. The need for a regulated body, a body under control and well-disciplined, is seen as originating in the emergence of Western capitalism, which requires ‘docile and productive’ bodies. Medicine, it is argued, is directed at creating such bodies:41 the growing importance of preventive medicine and the use of the concept of ‘life-style’ to regulate employees in order to manage corporate insurance demands have meant that there is a major intervention of medical ideas and practice into everyday reality – through diet, exercise, anti-smoking norms, sexual regulation of appropriate (that is ‘healthy’) partners,

the regulation of childbirth, and the hygienic treatment of death [p.18].

The social constructionist perspective emphasises that medical knowledge is, like lay knowledge, constructed by and dependent on a particular society. Such knowledge is relative, and can be ‘renegotiated’, or undergo structural change, which incorporates changes in the relations between those who share in it, as when the doctor–patient relationship undergoes fundamental change. In health care we often behave in a way that suggests that medical knowledge represents essential truths; but from the ‘post-structuralist’ social constructionist point of view, this is because our society gives doctors (and scientists) special power over truth (as it once gave the church such power). Our behaviour in relation to nursing knowledge suggests that this possesses fewer essential truths, as if nurses do not enjoy quite the same social power as doctors. Social constructionism is a way of exploring the relative nature of such socially powerful bodies of knowledge as medicine; a way of understanding the social and historical conditions that give them their truth value. Renegotiation and a repositioning of less powerful social groups in a way that is more fully in accordance with interests that have been obscured by a very dominant body of knowledge, can theoretically follow. Turner believes that the scientific medical curriculum, with its emphasis on acute illness and ‘heroic medicine’, maintains the dominance of the natural sciences; and that psychological, sociological, economic, political, and environmental causes of illness are excluded from systematic study, despite changes in the character of disease and the needs of an increasingly dependent population.41 He suggests that health care should commit itself to an ‘interdisciplinarity’ based on the idea of the ‘whole person as the focus of health care’: Scientific medicine is limited because it is based on a narrow, specialised and technical view of the human body as a machine which responds in a determinate way to the therapies derived from clinical experience and basic research [p.139].

Williams reminds us that disability theory offers an alternative to the scientific medical

42 Cancer, care, and society

perspective.42 He draws our attention to those who have rejected models of disability that focus on physical structure and function, activity, and social disadvantage, in favour of an approach that views disability as a form of social oppression, and as less to do with the body itself, than with the ‘prejudices and barriers which mitigate against full participation on equal terms’ (p.47). In her paper on being an anthropologist in the ‘kingdom of the sick’, Susan DiGiacomo describes her experience of medical practice when she is diagnosed with Hodgkin’s disease.43 Much of her account is concerned with the encounters she has with doctors supervising her treatment. She sets out to ‘demystify’ her disease and her treatment, both as a means of ‘staying sane’ and to ‘restore some sense of control’: Treatments of indefinite length and uncertain outcome invariably inspire fear and rage, and rob the cancer patient of much of his personal autonomy. In such circumstances knowledge is the only kind of power available [p.316].

Hospital staff, she says, disapproved of her curiosity; and the hospital culture defined ‘categories and persons – doctors and their patients’ and their relationship to each other. As a service user, DiGiacomo finds the dynamics of health care controlling, and disapproving of knowledge and power being placed in the hands of the individual, and she experiences this as detrimental to her care and well-being. As an anthropologist, she believes that orthodox Western medicine (‘biomedicine’) is a cultural system that creates, or attempts to create, the reality of those involved in it. Powerful forces, like language, authority, organisational rules, and valuing of certain types of knowledge (the ‘discourse’ of biomedicine) combine to form a cultural system that is experienced as normality, though counter-systems exist and may be the chosen systems of different individuals. The way we use language to represent disease and our bodies can be said to reflect our beliefs about disease, held individually or as a group. Cassell found that the patients he interviewed saw disease as ‘an intrusive object rather than as a part of themselves’, much as modern medicine does.44 It seems particularly appropriate to us to refer to

malignant tumours as ‘its’ or independent entities, as the people in Cassell’s study did; though, he says, it is possible to conceive of a language for tumours that treats them as part of us. Cassell argues that it is the diseases themselves (and not merely the tumours) that are seen as objects. He found that symptoms and organs involved in the disease were referred to in the same impersonal way. Though Cassell remains undecided about whether the mind’s view of the body, reflected in language, is culturally determined, or whether this view is ‘biologically inherent’ (neatly reflecting the line separating social constructionist and naturalistic, sociobiological viewpoints), he inclines to the latter. While the effect of speaking of disease as an ‘it’ may be to place distance between the person and the disease, Cassell concludes that it may be of greater therapeutic value to use language to reduce that distance:44 words in their concrete reality may be a bridge through which the person can bring into his ken and perhaps even influence, parts of the body which until then reside in a mysterious inner world seemingly inaccessible to consciousness, much less to conscious action [p.146].

As a cultural system, DiGiacomo argues, biomedicine can sometimes be ‘renegotiated’: if patients hold strong beliefs in a counter-cultural system, a different way of constructing health care, they may be able, through dialogue, to modify the way that health care is made available to them.43 Biomedicine, though, is very powerful, and can point to the many benefits and advantages it confers: it is often difficult, as an individual, to impose oneself upon this system, and doing so may carry the risk of being judged disruptive. Susan DiGiacomo’s account in effect chronicles her own efforts to ‘renegotiate’ the terms of the system of biomedicine that puts forward her regime of care and treatment.43 Mathieson and Stam describe a different, but perhaps related type of ‘negotiation’ in their discussion of ‘cancer narratives’:45 In negotiating their way through regimens of treatment, changing bodies and disrupted lives, the telling of one’s own story takes on a renewed urgency. In the end, they are more than just ‘stories’ but the vehicle

Cancer, care, and society 43 for making sense of, not just an illness, but a life [p.284].

individual sufferers have of what medical practitioners identify as disease:

Thus ‘renegotiation’ can be seen as taking place both externally, in interaction with a system or culture, and internally, as a process of reinterpreting or remaking identity in the face of momentous personal events. Chronic illness, to use the term introduced in Michael Bury’s famous paper,46 can be interpreted as a special kind of disruptive experience – a biographical disruption – which leads to a fundamental rethinking of a person’s biography and self-concept.47 Charmaz, too, conceptualises illness as a form of assault on the self, in which ‘former self-images’ crumble away ‘without a simultaneous development of equally valued new ones’ (p.168).48 While there is evidence that not all chronic illness is experienced in this way,47 both Bury’s and Charmaz’s work serves to illustrate the force of Mathieson and Stam’s arguments about the role of telling and retelling one’s own story, or ‘self-narrative’, in the reconstruction, or ‘renegotiation’ of identity under conditions of illness.45 Frankenberg suggests that the world of biomedicine and the world of the patient diverge chronologically, especially in chronic disease, where the physician’s involvement is much shorter than the patient’s:49

Disease depends on the existence of the social organisation of biologists and the medically trained, and illness on a socially constructed sense of self which certainly does not exist in the same form in all societies [p.17].

the knowledge and understanding over time of the sickness trajectory enjoyed by technicians, nurses, and especially patients and their relatives may well be much greater than that of their physicians. In general, the physician may know more than the patient about acute disease in practical as well as in theoretical terms. He or she may have seen many discrete patients over a period of years; the chronic patient on the other hand has had the opportunity to study one patient over many years and continuously. A collection of such patients organised into a specific patient group may have much to teach not only about illness and sickness but also about disease [p.19].

Frankenberg offers a distinction between ‘disease’ and ‘illness’, consistent with a social constructionist perspective. By ‘disease’, Frankenberg means disturbances in body functions and performance seen in biological terms; ‘illness’, on the other hand, is concerned with the perceptions

Our sense of the nature of disease and illness and our related behaviour is specific to the way that we have developed, individually and historically, within a society. Frankenberg, who is making room for a ‘renegotiation’ of some widely held cultural assumptions by pointing to the relative nature of phenomena such as disease and illness, takes issue with sociologists who approach ‘deathandying’ as if it were one word; this, he points out, implies that all but the final stages of life can be ‘reasonably analysed without reference to its most universal and inevitable end, and shifts responsibility for ‘deathandying’ to specialists, such as hospice workers and social scientists. Instead, he uses the word ‘lifedeath’ to refer to the part of life in which death is ‘part of the not yet conscious’, and ‘deathlife’ for life that is accompanied by ‘consciousness of its not too far distant end’ (p.18). Arthur Kleinman also sees a contrast between patients’ experiences of illness and the medical focus on disease, though he believes it is possible, indeed therapeutic, for clinicians to help patients to ‘order’ their experience.50 What illness means to people, he says, should be interpreted by patients, families and practitioners together. The medical system, though, tends to detach practitioners from the experience of illness. The cultural shaping of the experience of illness is reflected in the characteristic way we perceive and monitor our bodies. We are very careful about what we allow into our bodies, what we try to exclude, and how we manage material expelled from our bodies. We have a particular sense within communities and societies of what it means to ‘take care of ourselves’, and of what it means to lead a healthy life. We have social rules to manage contagion, as the rules for dealing with coughing, sneezing, and washing show. There are areas where the difference between good and bad practices

44 Cancer, care, and society

becomes blurred, as with the taking of drugs in sport: some sections of the sporting world are more prohibitive than others, with the result that our sense of how to regulate our bodies becomes touched by ambiguity. Keeping our bodies in order – not too spotty, not too fat – carries a sense of obligation to others: our fellows, our communities may accuse us of ‘letting ourselves go’ if we put on weight, and failure to follow social rules of good bodily order may offend or threaten others, as is the case with spitting, or scratching ourselves. Kleinman’s explanation of disease (as opposed to illness) is that it is created when illness is ‘recast’ by the practitioner ‘in terms of theories of disorder’ (p.5); disease is an ‘it’, not a ‘me’ of personal experience, created within a specific system of names and classifications.50 From the point of view of biomedical culture, disease is defined as, and confined to, changes in biological structure or function, but from a ‘biopsychosocial’ perspective, Kleinman argues, disease represents an interaction between ‘body, self, and society’ (p.6). The strong cultural position of biomedicine in Western societies means that the mechanism of disease (the way it alters biological structure or function) often represents its meaning. Cancer, whose mechanism and treatment we do not yet completely understand, is therefore:50 an unsettling reminder of the obdurate grain of unpredictability and uncertainty and injustice . . . in the human condition. Cancer forces us to confront our lack of control over our own or others’ death. Cancer points up our failure to explain and master much in our world. Perhaps most fundamentally, cancer symbolizes our need to make moral sense of ‘why me?’ that scientific explanations cannot provide [p.20].

He proposes an alternative approach to therapy, in which medical care is ‘reconceptualised’ and relations between medical practitioner and patient are renegotiated. This approach involves ‘an empathetic witnessing of the existential experience of suffering’ and ‘practical coping with the major psychosocial crises that constitute the menacing chronicity of that experience’ (p.10);50 it is offered as a counter-blast to the biomedical specialist who, Kleinman suggests, does not:50

credit the patient’s subjective account until it can be quantified and . . . rendered more ‘objective’ . . . Illness experience is not legitimated by the biomedical specialist, for whom it obscures the traces of morbid physiological change [p.17].

Frankenberg, for one, expresses reservations about whether Kleinman’s ‘reconceptualisation’ of medical care is as fundamental as it might seem (it may, he says, be ‘radical’ rather than ‘revolutionary’).49 He points out that drawing a distinction between disease and illness does not mean that concepts of disease are rejected. Frankenberg implies that Kleinman’s ‘empathetic witnessing’ amounts to a proposal that: the physician must learn the patient’s interpretation and the nature of the illness, and then in turn, as part of the cure, teach the patient as much about the disease as is possible and necessary for treatment to be both carried out and complied with [p.16].

Consequently, power and control in the therapeutic encounter is retained by medical practice, and the patient remains suppliant, petitioning for dispensations. Frankenberg sees hospital patients’ time as routinised and inflexible, with ‘almost total disruption’ of ‘the natural rhythms of bodily desires’ like sleeping, eating, evacuating waste, and enjoying sexual experience.49 Healing and illness, he says, take place within a ‘time view’ that is the patient’s own, and which is infrequently shared by physicians and nurses; medicine, analysing and treating the disease, is practised in another time, distant from the patient. In hospital, the argument goes, patients lose control over their own time to medical and nursing staff, who maintain the power relations of public health care. Radical change is beginning to take place with the rise of the user movement, but for Frankenberg such change is less than fundamental so long as it does nothing to affect the most deeply rooted processes of health care practice. Revolutionary change can only take place when patients ‘take charge of their own time’. For healing to be established as part of our culture, medicine must ‘renegotiate’ its relationship with service users and other health care workers on the basis of equal partnership, and relinquish its control over the time of others, which enhances its power, diminishes the

Cancer, care, and society 45

autonomy of others, and puts distance between it and the experience of illness.49 Susan DiGiacomo, who writes of cancer treatment as ‘as brutally primitive as any inflicted by the leeches and barber-surgeons of old’ (p.318), found her identity ‘assailed’ by hospital and by having cancer.43 Cancer, she says, quoting Erving Goffman,51 is a stigma that reduces a ‘whole and usual person’ to a ‘tainted, discounted one’, and as such affects the way that relationships between patients and their doctors are structured. She agrees with Susan Sontag that cancer and cancer treatment are often referred to with military terminology,12 and that metaphorically speaking, cancer implies ‘social deviance, social injustice, and political corruption’; the individual with cancer is caught up in the implications of catastrophe and evil. Having lost control of her work and her body, DiGiacomo was determined to keep control of her identity, including ‘anthropologist’, her professional identity. Knowledge, asking questions, was a means of avoiding becoming a victim; but when she approached doctors as colleagues, rather than superiors, she found they were both surprised and disapproving, and that conflict occasionally ensued. She experienced the social power relations incorporated in the formal health care setting as detrimental to well-being (or as Frankenberg might say, contrary to healing). DiGiacomo tells how an eminent oncologist supervising her care treated detailed information about Hodgkin’s disease as too dangerous to pass on to her, and as potentially damaging to her sanity; her anaesthetist and surgeon refused her husband access to the recovery room on the basis of custom (‘pseudo-hygienic and pseudo-practical nonsense’); the purpose of attending for treatment simulation was misrepresented; radiation ‘burns’ were renamed radiation ‘reaction’; and hair loss that was more extensive than predicted was explained as the result of increased ‘traction’ caused by her long hair. She provides a number of examples of what Frankenberg49 sees as the medical control of patient’s time: I was told peremptorily to appear the next day for my first treatment. I got angry. I lived more than two hours’ drive from the hospital and needed advance

notice in order to organise my new commuter life. I refused to come in until the following Monday, and the reaction was one of surprise and indignation. It did not matter that no time frame had been specified, I should simply do what I was told without argument, regardless of the dislocation and inconvenience it caused me. I prepared for my weekly visits with my radiologist as I would prepare for any interview I would do as a field anthropologist. I thought out my questions beforehand, and conducted the interview from notes. I had to talk fast, because after the first five or ten minutes, my doctor began edging toward the examining room door, an indication she felt she had spent enough time answering my questions and had other important things to do. These visits were clearly for her benefit, so she could gauge my progress, not for mine [p.323].43

Ultimately, Susan DiGiacomo comes to feel that she has been ‘bullied into accepting more treatment . . . made to submit, to comply, through the strategic manipulation of information’ (p.325): she sees the counter-process of overcoming confrontation and submission as possible through a ‘negotiation’ with clinical practice.43 Reviewing her experience of hospital care and treatment for cancer, she comments that her refusal to participate in roles ordinarily assigned by the health care system enabled her to redefine her relationship with her doctors, and made apparent the meanings or beliefs which give the system structure and shape. People with cancer, DiGiacomo feels, are particularly subject to a process of depersonalisation; in other words, they ‘become their disease’. Personal contact with health-service users is, she says, ‘highly routinised’, and doctors share the belief that a person’s knowledge that she has cancer ‘renders her so emotionally unstable that she is unable to confront and live with any reminders of the severity of her condition’ (p.337). Patients are assumed to be unable to understand explanations, so information is withheld. Angry patients are seen as hostile or resentful rather than as having a legitimate grievance; responsibility for conflict is seen as that of the patient and not the doctor. Consultations do not allow time for questions, because they are dominated by the physical examination: the end of the consultation is indicated by a shuffling of papers or an opening of the

46 Cancer, care, and society

door, making a private discussion public and therefore ending it. Writing some 20 years ago now, DiGiacomo’s experiences may sound implausible. But the manner in which individual health service users are still circumvented by care that finds it easier to manage a clinic rather than engage with a person is well illustrated by Helen Allan’s account of caring and non-caring in a fertility unit:32 The ability to combine caring and non-caring was achieved through an activity I have described as ‘nursing the clinic’ where the clinic and the doctor became the focus of nursing rather than the patient . . . Suki and Evelyn ‘nursed the clinic’ as they welcomed the patients, showed them into the consulting rooms and responded to doctors’ demands. But they did not ‘nurse’ Joanna. It was not possible to know whether Joanna felt she was being ignored and my interpretation of non-caring raises interesting questions about what ethical justification there can be for emotional distance in the face of evident distress such as crying [p.54].

Susan DiGiacomo concludes that encounters between doctors and people with cancer are structured as they are to keep the individual in a position of ignorance, leaving the doctor in a better position to secure the patient’s co-operation with dangerous and unpleasant forms of treatment.43 The doctor emerges ‘omniscient and omnipotent’, which has the effect of reducing the ambiguity surrounding the patient’s prognosis following treatment. ‘Declaring a war on cancer’ justifies the most extreme of measures, diminishes the necessity for openness and proportionality, and obscures the rationale for genuine consensus called for in a ‘negotiation model’ for practice. Some sociological work may actually ‘aid and abet’ situations in which patients are kept in relative ignorance by ascribing difficulties in communication to patients’ own psychological states. Beneath the successful, technological public image of biomedicine, DiGiacomo sees a reality of uncertainty, ambiguity, and contradiction. Treatment decisions that rely on medical control of information lead to distrust and fear, and end with a sense of betrayal when treatment does not produce the desired result. Negotiation and resolution begin when DiGiacomo is informed promptly of a change in her

medical condition, and progress further as her GP begins to act in the role of advocate. According to her GP she is more afraid of ‘being out of control and not in a position to make an informed decision’ (p.328) than she is of her cancer; her most urgent need is therefore to ‘comprehend my disease and its treatment to the fullest possible extent’ (p.328).43 A meeting, lasting for an hour, is held for her with both oncologist and radiologist, with questions submitted in advance, and a transcript of answers provided. She is given a copy of the full research protocol for an investigation of experimental treatments for Hodgkin’s disease before beginning chemotherapy. She questions the necessity for 12 cycles of chemotherapy, pointing out that the standard ‘salvage’ regime for patients who have ‘failed’ radiotherapy is six cycles. Her oncologist tells her that there is no way of knowing whether six cycles is sufficient, but DiGiacomo continues to believe that ‘overestimating the required dosages might be as serious as underestimating them’. At the beginning of treatment, she experiences severe facial pains, gastrointestinal problems, immunosuppression, and fever, though no infection can be identified. She discusses the possibility of chemotherapy being ineffective, and is given details of her chances of survival if this were the case; talking about death with her doctor seems to demonstrate the value of a ‘negotiation model’ for clinical practice, which she glosses as ‘each of us seeing the other in three dimensions instead of two’ (p.332). As DiGiacomo renegotiates the terms of her health care, insisting both that she is given detailed information and that her experience of treatment and illness, and insight into the effects upon herself, are fully acknowledged, we see practice turned 180 degrees away from Mrs Abel’s predicament. Whereas Mrs Abel remained stranded, without credence or credibility and was ultimately acted upon (literally operated upon) blindly, in ignorance of her needs and wishes, DiGiacomo fights hard to win recognition of herself and of the grounds for her well-being. In her later dealings with her oncologist, she seems to experience greater acknowledgement of her own ‘time view’, her own ‘illness-time’, her sense of living ‘lifedeath’ not ‘deathlife’ (see Frankenberg49). Collaboration

Cancer, care, and society 47

on medical decisions becomes part of their meetings:43 He came to respect my ability to observe and report sensitively and accurately . . . as I began to negotiate more aggressively (and more successfully) for lower doses. This was no fiction of participation; it was based on mutual understanding of chemotherapy as a necessarily and inherently indeterminate process [p.333].

Being a ‘collaborator’ rather than ‘an object of treatment’ provides Susan DiGiacomo with a sense of empowerment, which relieves depression and fear, though it also means that she has to share her oncologist’s worries. She believes that her persistent fever is a symptom of the damage chemotherapy is doing to her body: she feels she is being ‘destroyed in order to be saved’. Eventually, treatment is halted and she concludes that her own explanation of her condition, that her body is unable to tolerate chemotherapy, is more credible than her doctor’s belief that she has suffered an undetectable infection. She implies that her doctor is forced to acknowledge the strength of her case, and thus in a sense a new position has been negotiated on what counts as credible knowledge about illness: the medical explanation (or discourse) is finely balanced in terms of credibility with the personal one. A long and difficult struggle, in the course of which a model for negotiation in clinical practice is mapped out, ends with the final word on a clinical problem going to the patient. At the end of the struggle, in the course of which biomedical culture has in a local way accepted compromise, opened its borders, DiGiacomo’s oncologist acknowledges her time view, where illness is not experienced as a number of courses of chemotherapy but as degenerating physical integrity and impending collapse. A degree of parity is achieved as the relevance and significance of the personal experience of illness is conceded. DelVecchio Good and her colleagues believe that in America, oncologists have ‘a cultural mandate to instil hope’ in their therapeutic dialogues (or ‘narratives’) with patients.52 Like DiGiacomo, they identify a layer of uncertainty in medical knowledge about the outcomes of cancer and treatment that must compete with the cul-

tural imperative to offer hope. Their experience suggests that oncologists respond with expressions of ‘time without horizons or of highly foreshortened horizons’ to: create an experience of immediacy . . . Time horizons, through therapeutic discourse and interaction, are distinctly foreshortened, and experience is consciously composed ‘for the moment’. Endings, though palpably present for participants in clinical encounters, are unspecified . . . Instilling hope ‘for the moment’ becomes a legitimate and realistic task in the world of clinical oncology . . . [pp.856–857].

Creating hope by focusing on the present is a source of anxiety for patients who are looking for certainty and lack of ambiguity about the course of their illness; but patients, DelVecchio Good claims, often contribute to the process of generating commitment to treatment and hope for the future seen in their encounters with doctors. Hope, and compliance with medical regimens, are values deeply rooted in Western culture. To begin with, DelVecchio Good believes, consultations with oncologists are structured so as to avoid suggestions of crisis or ‘threat to daily existence’.52 A sort of ‘housekeeping’ takes place in which the organisational aspects of getting to treatment appointments are sorted out, and the effect is to keep things ‘unremarkable’. At the same time, metaphors of slow and patient struggle may be introduced, like ‘climbing a mountain’ and ‘one step at a time’, to suggest a process of steady achievement, which continues even when a dying trajectory is clearly under way. The mountainclimbing metaphor implies a kind of protest; it is:52 an image which suggests that the oncologist will pull the patient to safer, higher ground . . . a metaphor which taps into American concepts that through mobilizing personal will, the patient has resources to engage in the struggle for higher ground, for cure or remission [p.857].

When challenged to respond to concerns about prognosis, DelVecchio Good finds that clinicians employ ‘narratives of immediacy’, which:52 drew patients back into the everyday realities of living and of therapeutic housekeeping, of treatment

48 Cancer, care, and society schedules, of dealing with immediate side-effects, of assessing the current efficacy of the latest therapy . . . endings are rarely made explicit and progression is measured in calibrated bits, even though disclosure is considered to be the norm . . . [p.858].

own and that of others) and discriminating about what has meaning or what matters. Patricia Benner’s word for this is ‘agency’, which she interprets as openness to matters of significance.53 Agency develops with experiential learning:

Ultimately, when death or dying becomes an unavoidable reality, these ‘narratives of immediacy and hope, struggle and progress’ fragment and collapse. Unambiguous medical assessment of the stage or likely progress of an illness may, DelVecchio Good suggests, come out into the open more frequently at this point, when other narratives fragment. Perhaps this is the inevitable consequence of what DelVecchio Good calls ‘the dominant American narrative’, the cancer care story, which seems to offer frankness yet employs subplots of hope and encouragement to a soldierly willingness to shoulder necessary hardships in the battle to survive.52 The brave and hopeful soldier is not prepared for the potentially shattering end of the narrative. We find it helpful to put our faith in the brave persona we project as providers of health care or are offered as recipients; but we would perhaps like to be able to care for people with cancer so that we and they can be ourselves as much as possible and manage treatment, care, and future, without the need for such precarious roles. Neither Mrs Abel nor the nurses and doctors on her floor were able to express or acknowledge concerns freely.34 Mrs Abel was hemmed in by a vicious circle of unresolved difficulties; nursing and medical staff resisted to the last any modification of the clinical story of cancer as they understood it. Caitlin, in contrast, takes ‘a leap of faith’ and immerses herself as openly as she can in the needs of her patient, Ray, and his partner Lucy.23 Susan DiGiacomo fights doggedly to be given a seat at the table, to renegotiate the terms of her dialogue with health care and to be given a say in tipping the balance of decisions, even when ‘expert’ opinion is against her.43 It is not just a matter of rebelling against the system or trendy theory: what Mrs Abel and her carers lack, and what Caitlin and Susan DiGiacomo are struggling to achieve is a way of being in the world that is open to experience (both our

. . . what is learned in practice by the practitioner is considered knowledge even though it contains puzzles and cannot always be fully located in the currently explicated science . . . the knowledge of the practitioner goes both before and after science because what occurs in the natural field of clinical experience is more variegated and complex than can be captured at any one time by scientific experiment. What is known sets up the questions and influences what is noticed, and the actual clinical experience alters, extends, or disconfirms what is known in the scientific discourse. Experience . . . requires openness to the new situation, but that openness is constituted by what has gone before; it is not naïve and undifferentiated [pp.14–15].

Benner is interested in the agency of nurses as health care providers, in their ‘sense of responsibility for the patient’s well-being’, which becomes more sensitive to possibilities as the skill of the practitioner increases, and which is manifested in: negotiating and managing physician’s responses to the patient situation . . . and . . . being responsive to and advocating for the patient and family concerns in ways that more closely match the actual concerns and needs [pp.26–27].53

‘Agency’ thus conceived is the domain both of the caring professions and the recipients of health care, but comes into view as a possibility only when the traditional balance of power in health care is conceived as contingent on cultural and social practices (and therefore relative) rather than as absolute and essential, a part of the natural order. How indispensable ‘agency’ is to caring, how much a part of well-being, in or out of health care, probably depends upon one’s perspective, one’s beliefs given all the historical, social, and cultural influences that bear upon them. For me, ‘agency’ and ‘being available’ are ideas that try very hard to give us a sense of the closeness, insightfulness, inventiveness, and commitment of caring. They share an intense focus upon the

Cancer, care, and society 49

individual, the nurse, the mentor. Sometimes they might seem to involve an intensity of focus on the practitioner that somehow excludes wider considerations, including the voice of those on whose behalf care is provided. Structures in health care can be constructed to be more or less controlling of others, according to how much or how little control is seen as necessary to care or ‘manage’. Health care and illness take place in the larger, collective arena. We designate people as ‘well’, or ‘sick’, or ‘patient’ according to shared rules; we respond to people who are ‘patients’ according to the conventions and accepted practices of the roles we see as our own or the positions we take in the groups to which we belong. If ‘agency’ and ‘being available’ are about being committed to respond with discrimination to the experience of others, and are in some way central to the idea of caring, caring also encompasses the wider social or cultural arena where experiences of health and illness acquire their distinctive character, and health care organisations develop their formulas and structures, their distinctive ways of operating. It is easy to see health care as a monolith, immovable and unshakeable, but if we shake up the bits and pieces of our sense of what health care is, new arrangements come into view, to be espoused or discarded in their turn.

References 1. NHS go-ahead for new breast cancer drugs. The Guardian, 23 May 2006. 2. Two-drug therapy may slow breast cancer advance. The Guardian, 23 March 2006. 3. Ultrasound could replace mainstream cancer treatments. The Guardian, 25 October 2005. 4. Here’s how treatment hits target. The Sun, 25 May 2006. 5. A cure that boldly goes . . . The Sun, 3 November 2005. 6. Watchdog approves embryo selection to help prevent cancer. The Guardian, 11 May 2006. 7. Lifestyle changes could stop a third of cancers, says study. The Guardian, 18 November 2005. 8. Schools may offer cervical cancer vaccination to all girls. The Guardian, 8 October 2005. 9. Nigeria bishops scorn US ‘cancer’. BBC News, 4 July 2006. http://news.bbc.co.uk/1/hi/world/africa/5144036. stm (accessed 24 July 2007).

10. Comment & Analysis: As doctors, we see the cancer that eats away at the NHS. The Guardian, 27 June 2005. 11. Field attack on ‘cancer’ of spin doctors. The Guardian, 4 August 1998. 12. Sontag S. (1977). Illness as Metaphor. New York: Farrar, Strauss & Giroux. 13. Gould J. and Nelson J. (2005). Researchers reflect from the cancer precipice. Reflective Practice 6, 277–284. 14. Herzlich P. and Pierret J. (1987). Illness and Self in Society. Baltimore, MD: Johns Hopkins University Press. 15. Lupton D. (1994). Femininity, responsibility, and the technological imperative: discourses on breast cancer in the Australian Press. International Journal of Health Services 24, 73–89. 16. Seale C. (2001). Sporting cancer: struggle language in news reports of people with cancer. Sociology of Health and Illness 23, 308–329. 17. Seale C. (2001). Cancer in the news: religious themes in news stories about people with cancer. Health 5, 425– 440. 18. Seale C. (2002). Cancer heroics: a study of news reports with particular reference to gender. Sociology 36, 107– 126. 19. Seale C. (2003). Health and media: an overview. Sociology of Health and Illness 25, 513–531. 20. Seale C. (2005). New directions for critical internet health studies: representing cancer experience on the web. Sociology of Health and Illness 27, 515–540. 21. Hochschild A.R. (1979). Emotion work, feeling rules, and social structure. American Journal of Sociology 85, 551–575. 22. Johns C. (1995). Framing learning through reflection within Carper’s fundamental ways of knowing in nursing. Journal of Advanced Nursing 22, 226–234. 23. Johns C. (1997). Caitlin’s story – realizing caring within everyday practice through guided reflections. International Journal for Human Caring 1, 33–39. 24. Johns C. (1996). Visualising and realizing caring in practice through guided reflection. Journal of Advanced Nursing 24, 1135–1143. 25. Johns C. (1996). Understanding and managing interpersonal conflict as a therapeutic nursing activity. International Journal of Nursing Practice 2, 194–200. 26. Johns C. (1998). Caring through a reflective lens: giving meaning to being a reflective practitioner. Nursing Inquiry 5, 18–24. 27. Johns C. (1999). Reflection as empowerment? Nursing Inquiry 6, 241–249. 28. Johns C. (2001). Reflective practice: revealing the [he]art of caring. International Journal of Nursing Practice 7, 237–245. 29. Johns C. (2002). Guided Reflection: Advancing Practice. Oxford: Blackwell Science.

50 Cancer, care, and society 30. Benner P. and Wrubel J. (1989). The Primacy of Caring: Stress and Coping in Health and Illness. Menlo Park, CA: Addison-Wesley. 31. Menzies I. (1959). The functioning of social systems as a defence against anxiety. In Containing Anxiety in Institutions: Selected Essays Volume 1. London: Free Association Books. 32. Allan H. (2001). A ‘good enough’ nurse: supporting patients in a fertility unit. Nursing Inquiry 8, 51–60. 33. McNamara B. (2004) Good enough death: autonomy and choice in Australian palliative care. Social Science and Medicine 58, 929–938. 34. Strauss A.L. and Glaser B.G. (1970). Anguish: a Case History of a Dying Trajectory. London: Martin Robinson. 35. Parsons T. (1951). The Social System. London: Routledge and Kegan Paul. 36. Lupton D. (1994). Medicine as Culture: Illness, Disease and the Body in Western Societies. London: Sage Publications. 37. Turner B.S. (1988). Medical Power and Social Knowledge. London: Sage Publications. 38. Beresford P. (2001). Service users, social policy and welfare. Critical Social Policy 21, 494–512. 39. Featherstone C. (1996). Views of the body, stigma and the cancer patient experience. In Parry A. (ed.) Sociology: Insights in Health Care. London: Arnold. 40. Spence J. (1986). Putting Myself in the Picture: a Political, Personal and Photographic Autobiography. London: Camden Press. 41. Turner B.S. (1992). Regulating Bodies. London: Routledge. 42. Williams S.J. (2000). Chronic illness as biographical disruption or biographical disruption as chronic illness? Reflections on a core concept. Sociology of Health and Illness 22, 40–67.

43. DiGiacomo S.M. (1987). Biomedicine as a cultural system: an anthropologist in the kingdom of the sick. In Baer H.A. (ed.) Encounters with Biomedicine. New York: Gordon and Breach. 44. Cassell E.J. (1976). Disease as an ‘it’: concepts of disease revealed by patients’ presentation of symptoms. Social Science and Medicine 10, 143–146. 45. Mathieson C.M. and Stam H.J. (1995). Renegotiating identity: cancer narratives. Sociology of Health and Illness 17, 283–306. 46. Bury M. (1982) Chronic illness as biographical disruption. Sociology of Health and Illness 4, 167–182. 47. Lawton J. (2003). Lay experiences of health and illness: past research and future agendas. Sociology of Health and Illness 25, 23–40. 48. Charmaz K. (1983). Loss of self: a fundamental form of suffering in the chronically ill. Sociology of Health and Illness 5, 168–195. 49. Frankenberg R. (1988). ‘Your time or mine?’ An anthropological view of the tragic temporal contradictions of biomedical practice. International Journal of Health Services 18, 11–34. 50. Kleinman A. (1988). The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books. 51. Goffman E. (1963). Stigma: Notes on the Management of Spoiled Identity. Englewood Cliffs, NJ: Prentice-Hall. 52. DelVecchio Good M.-J., Munakata T., Kobayashi Y., Mattingly C. and Good B.J. (1994). Oncology and narrative time. Social Science and Medicine 38, 855–862. 53. Benner P., Tanner C. and Chesla C. (1992). From beginner to expert: gaining a differentiated clinical world in critical care nursing. Advances in Nursing Science 14, 13–28.

CHAPTER FOUR

Cancer epidemiology Elizabeth Davies and Vivian Mak

Introduction Epidemiology is usually defined as ‘the study of the distribution and determinants of disease in human populations’. Although it employs methods drawn from a wide range of areas including survey work, randomised controlled trials, and industrial quality control techniques, a defining quality of epidemiology data is that it refers to populations or groups of people rather than to particular individuals. As a result the discipline makes use of the uneven distribution of disease within and between populations to identify and explore clues to the possible causes of disease. However, the observation that one group in a population is statistically more likely to develop a disease does not allow the identification of particular individuals in that group that will develop a disease. In the UK there is a strong tradition of collecting epidemiological data for research and surveillance of population health, and of using this evidence and international comparisons to develop public health policy. Health professionals working in the cancer field therefore need some knowledge of epidemiology to understand both the populations in which they work and the rationale for the development of health policy. Also, although epidemiological data cannot answer questions about an individual with any certainty, patients do often ask questions about their disease and its treatment which may be of an epidemiological nature, and such findings are

often reported in the media. Health professionals need to be able to answer patients’ questions or direct then to other sources of information. This chapter aims to present an applied perspective on epidemiology by focusing on questions people with cancer often ask (see Box 4.1), using where possible examples of national and regional data for some of the more common cancers. It also describes some core epidemiological concepts, some common types of study, and some of the seminal studies in cancer epidemiology and international comparative work. References and sources for further information are included so that the reader can then apply the principles to other less common cancers.

Descriptive cancer epidemiology Descriptive epidemiology is the study of trends in the incidence of disease over time, within population subgroups and by geographical area. It also concerns the subsequent survival of patients after the diagnosis of disease. Each year over 10 million cases of cancer occur around the world and it causes six million deaths a year. How common is cancer in the UK?

There are several ways of describing how common a disease is within a population but this first requires a definition of a case of the disease. Since the 1950s, cancer has been defined using

52 Cancer, care, and society Table 4.1 Rank Males 1 2 3 Females 1 2 3

Most common cancers in England and Wales, 2000 Site

Number of registrations

Proportion of all cancers (%)

Prostate Lung Colorectal

27 149 23 245 18 956

20 17 14

Breast Colorectal Lung

40 467 16 344 15 165

30 12 11

Box 4.1 Epidemiological questions that people commonly ask about cancer Descriptive epidemiology • How common is cancer in the UK? • Has cancer been becoming more or less common? • Are more people dying from cancer? • How common is this cancer in people my age? Aetiological epidemiology • How do we find out about the causes of cancer? • Was it something I was exposed to? Prevention and screening • Could I have done anything to prevent it? • Why isn’t there screening/earlier diagnosis for this cancer? Clinical epidemiology • What are my chances of cure with this treatment? • Should I undergo this treatment? • What does this new study mean for me? Public health policy • What is the government/cancer network/hospital/ primary care trust doing to improve the outlook for people with cancer? • Is the UK doing as well as countries of similar economic status? • How is information about cancer routinely collected and used in the UK and elsewhere?

the World Health Organisation International Classification of Diseases (ICD) based on topographical features (site) and behaviour of cancer (whether benign or malignant). These classifications have been successively revised and the tenth edition – ICD-10 – is now in use. Since 1976 a

specific International Classification of Disease in Oncology has been available – ICD-O, which is now in its third edition.1 This includes information on histology (morphology), which is usually available from the pathology report, as this has now been recognised as an important determinant of survival and indicator of treatment. Data on the number of people diagnosed with cancer each year are collected by cancer registries from hospitals, primary care trusts and hospices in the UK, coded and then sent to the National Cancer Intelligence Centre at the Office for National Statistics where national figures are collated. These figures show that cancer is a relatively common disease – more than one in three people in the UK will develop it at some time in their life, and cancer causes one in four deaths.2 For men the most common types are prostate, lung, and colorectal, and in women breast, colorectal and lung (see Table 4.1). Together these sites account for around one half of all cancer diagnoses each year. Epidemiological terms to describe ‘commonness’ or the frequency of a disease in the population are generally called ‘rates’. An important distinction is made between the terms ‘incidence’ and ‘prevalence’. Incidence refers to the transition between health and disease and usually means the number of patients newly diagnosed in a population in any given time period. This is often presented as the crude incidence rate per 100 000 people in a population per year. The follow-up period may, however, be longer and expressed as a cumulative incidence for this length of time. An incidence rate is calculated using person-time as the denominator:

Cancer epidemiology 53

Number of persons who become Incidence diseased during a defined period rate = Total person-time at risk ( persons ) during the follow-up period

To be accurate, the number of people affected must include all those patients with disease, not simply those seen and treated in hospital. For example, some patients may never attend hospital, they may be diagnosed clinically, by biopsy and microscopic diagnosis, or attend hospital only briefly for a formal pathological diagnosis before receiving palliative care in the community. Finally cancer may be discovered only at post mortem. If only the cases seen and treated in hospitals are counted, it is very likely that the true incidence of a disease in a population will be underestimated. Similarly, accurate data on the size of the population are as important as those on the number of cases. The population of interest may be a nation, a region or an administrative area such as in the UK a cancer network, or a primary care trust. In the UK these population figures are available from the Office for National Statistics where they are updated regularly using data from the census. It is usual to want to compare the incidence rates between different areas, but the age structure of the population of areas may differ markedly between themselves and over time, making it difficult to draw a conclusion about this. For example, some countries in Europe have an older population than others and we may want to know whether, taking this into account, they still have a higher incidence of cancer. In this situation an ‘age-standardised rate’ is used. This is a summary index designed to simplify comparison of cancer rates between different populations with different age structures. This is achieved by adjusting the rates with reference to a standard population with a standard age structure. By convention either the ‘World standard’ or the ‘European standard’ population is used. These may also be applied to administrative areas within countries. The key point to appreciate is that these populations do not exist as ‘real’ populations, but are simply a standard reference. Prevalence refers to the state of having a disease and is the number of patients diagnosed with

cancer in any given period and alive at a given point in time. It is often used as a measure of disease burden, and of the likely need for continuing care (e.g. follow-up, rehabilitation or support), and is therefore of use in planning health services. Because it is difficult to estimate what proportion of patients are completely cured, prevalence is estimated simply as the number of cancer survivors. For example, estimates suggest that approaching 3 million people in the European Union were diagnosed in the previous 5 years and remain alive.3 In the UK, people diagnosed with cancer in the last 10 years represent just over 1% of the population. Another way of describing the impact of a disease on a population is to describe the mortality or mortality rate within the population. This is the incidence of death from cancer in the population within a given time period. Has cancer been becoming more or less common?

Around the world, cancer has been becoming more common. In the UK, data collected by the Office for National Statistics show that both the number of new cases and the age-standardised incidence of cancer has increased in England and Wales since the 1970s for both men and women. The incidence in younger adults (men aged less than 65 years and women aged less than 55 years) has remained fairly stable during this time, and much of the increase is among older adults. This is partly due to better reporting of cases during this period, and an ageing population leading to greater longevity and a higher proportion of elderly.2 Figure 4.1 shows the age-standardised incidence rates for cancer in South East England between 1960 and 2003. Cancer is, of course, not one disease but a mix of many different ones, and aggregating data about these diseases will mask important differences. One cancer that has been increasing due to both increased detection and increased longevity is prostate cancer, and this is now the most common cancer in men. Figure 4.2 shows trends in the incidence of prostate cancer in South East England. Since 1985, the overall incidence of prostate cancer has increased from 44.1 to 81.6 per

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has also been increasing in areas of Northern and Western Europe for the same reason.3

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Figure 4.2 Trends in the age-standardised incidence rate for all prostate cancer in South East England 1985–2002.

100 000. The incidence of localised prostate cancer increased from 15.5 to 47.3 per 100 000, while the incidence of non-localised prostate cancer decreased slightly from 13.3 to 11.8 per 100 000. The rate of prostate cancer where there was no information about the extent of disease increased from 15.3 to 22.5 per 100 000. It is likely that the widespread use of a new diagnostic test prostatespecific antigen (PSA), particularly in the 1990s, explains the increase in localised prostate cancer.4 In the European Union, prostate cancer is the fourth most commonly diagnosed cancer with around 157 000 new cases each year. Its incidence

Data collected by the Office for National Statistics from the 1950s show that deaths from heart disease and infectious disease declined until the late 1990s. Similar data show that although the incidence of cancer has increased each year, the mortality, or rate of death, from cancer each year in the population has decreased during the same period. This has occurred for both men and women.2 Figures for South East England also illustrate the same trend, and the decrease in mortality for males can be seen in the earlier Figure 4.1. How common is this cancer in people my age?

Though some cancers such as testicular cancer occur in young adults, cancer is primarily a disease of older people. Again, the example of prostate cancer illustrates this well. The incidence rate within any particular age group can be easily calculated and this is called the age-specific incidence rate. Figure 4.3 shows these rates for prostate cancer from 1985 to 2002, and reveals that men

Cancer epidemiology 55

aged over 85 years had the highest rate. These graphs allow the calculation of the annual percentage increase in incidence and show that men in their 50s and 60s had the highest annual increase. In most recent years of data the trends were distinctly different in different age groups. Rates declined in men aged over 80 years but increased in younger men.4 ‘Childhood cancer’ is the term applied to cancer diagnosed in individuals before the age of 15 years and includes a wide range of diseases that differ from those affecting adults. In the UK leukaemias are the most common cancers affecting children (32%), followed by brain and spinal tumours (24%), and lympomas (10%). Is cancer more common in people in the UK than elsewhere?

In general, cancer is a disease of people living in developed countries. This is partly because of the older age structure of the population in these countries, and partly because of exposure to risk factors for cancer associated with a more affluent lifestyle. A series of recent international collaborative studies has provided much more detailed information on how the incidence and survival differ for people living in the different European countries. Overall the most commonly diagnosed cancers in the European Union are bowel, breast, lung and prostate cancer. For men, however, the incidence of cancer in the UK appears lower than the overall European rate, ranking 19 out of 25. Hungary has the highest incidence rate largely due to the high rate of lung cancer, while Greece and Cyprus have the lowest. By contrast for women the cancer incidence rate is higher for the UK than the overall European rate, ranking seventh out of 25. Denmark has the highest incidence of cancer in women, while again Greece and Cyprus have the lowest rates.3 Some cancers, for example cancers of the liver, cervix, or stomach, have a particularly high age-standardised rate in developing countries.

Aetiological epidemiology Aetiology is the science of causes, and aetiological or analytic epidemiology is the study of risk factors for the occurrence of disease. To answer questions

in this area, different kinds of studies are required from the descriptive trend studies already described – and in particular cohort or case–control studies. How do we find out about the causes of cancer?

Although in everyday life we talk commonly and easily about one factor causing or producing a subsequent event, in epidemiology the term causality is used much more carefully, and usually with caveats. The reason is that it is unusual to find one-to-one relationships between any particular exposure and the onset of a disease. This is often due to the difficulty of measuring exposures or events that may have occurred a long time previously, and also because many common diseases including cancer are caused by many different factors – so called multifactorial causation. Different factors may have come into play at many different time points over a long latent period before the cancer develops and presents, creating a complex web of interacting causes. The causes closer to the event of cancer production are usually called proximal causes, and may themselves have their own determinants – commonly called distal causes. Epidemiology conceptualises cause in a probabilistic way as something (other things being equal) that increases the risk of a disease. Often many different factors and risks may be involved, and, to complicate matters further, some may decrease the risk of the disease. Even with special analytical studies it is often very difficult to use epidemiological data to prove beyond doubt that a particular exposure is a definitive cause. This may need to be confirmed by an experiment – by either inducing cancer in animals or by intervening in a human population to prevent cancer. It is important to remember that even when factors are found that increase the risk of a disease at a population level, these are often very different from those that determine which individuals within the population develop the disease. The easily made assumption that relationships found at the population level will hold at an individual level is referred to as an ecological fallacy. It occurs because the ecological (population) effect fails to reflect the biological effect as it occurs at the individual level. Ecological bias occurs therefore when the measure of the

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association found at the group level is a distortion of any association occurring at individual level. Epidemiological enquiry often begins by carefully describing an association observed between two factors, and then proceeds to deduce the extent to which causal inference is possible. If a difference in risk is discovered between two populations, then assessing the possibility of cause generally considers whether three factors may be operating – chance, bias and confounding.5 These are described in turn. Chance Chance variation in the selection of a sample for any study can result in a false inference about the relevance of results to the whole population from which the sample was drawn. Tests of statistical significance have been designed to indicate how likely it is that a result in any sample arose by chance and is not in fact a real difference from the comparison group. The P value, which is given as a decimal, is the probability of obtaining (by play of chance) the observed distribution or a more extreme distribution, if no association truly exists. P values are influenced by both the size of the sample and the size or strength of the association. The larger the sample size, the higher the chance that the result is significant. Researchers usually set a probability value of less than 5% (P < 0.05) or 1% (P < 0.01) at which they call a finding ‘statistically significant’.6 This allows for the possibility that there is a one in 20 or one in 100 probability respectively that the difference could have arisen by chance. An increasingly used alternate measure is the confidence interval, which sets a range of values for the variable of study. The range is constructed so that it includes the range of values within which is it probable, given the sample size, that the true value falls. This specified probability is called the confidence level, and the end of the points of the confidence interval are called the confidence limits.6 Associations between variables may be statistically significant but not causal, and it is also possible for a causal relationship to exist even if the association is not statistically significant. Small studies are often said to lack the power (size) to detect weak causal associations. Methods to increase the ability of an analysis to detect a given effect include increasing the

sample size or pooling the results of several smaller studies together into a meta-analysis. Bias Bias can be defined as a systematic tendency for results to differ from the truth. The two most common sources of bias in epidemiological studies are selection bias and information bias. Selection bias occurs when the method of selecting study subjects into the groups being compared is not the same. This can also occur where participants differentially respond in one group or are recruited more commonly to one group rather than the other. Information bias occurs when the actual information collected from the two comparison groups is not the same. For example, participants in one group may inadvertedly be asked questions or recall information in different ways from those in other groups. Alternatively, a researcher who is aware of or ‘not blind’ to the research hypothesis may consciously or otherwise seek out or observe more factors of causal interest in one group than another. Potential biases need to be thought through in the design of new studies, as it can be difficult to correct these at the analysis stage. In any study a judgement will finally need to be made about their likely presence and the strength of any effect on the results. Confounding Confounding refers to the tendency of factors of interest to cluster together so that the groups differ in the exposure of main interest but also on a number of other related factors. A confounding factor is one associated with, but not a consequence of, the exposure of interest, and with the proximal or distant cause of the disease under investigation. The effect of a confounding variable may be to exaggerate the degree of association between disease and exposure – a phenomenon called positive confounding – or to mask a true relationship – negative confounding. The effect of confounding can be diminished by good study design but, unlike the effects of bias, can be eliminated at analysis stage by using statistical techniques that control for the effect of potential confounders. Potential techniques include standardisation and multiple regression. However, it is only possible to control for confounding factors

Cancer epidemiology 57

that have been measured in any study. If confounding variables have not been measured, or measured imprecisely, then the effect cannot be controlled and residual confounding will remain in the results. In assessing the likelihood that an association is causal, the possibility of chance, bias and confounding will need to be excluded. Sets of criteria for assessing causality have been developed to help with this. One such scheme is the Bradford Hill criteria set out in Box 4.2. Not all these criteria need apply in every case. Indeed in some instances a causal link may need to be assumed and prevention undertaken at a public-health level before the exact mechanism is understood. Box 4.2 Bradford Hill criteria for assessing causality 1. Strength: does the relative risk differ greatly from unity or the correlation coefficient from zero? If so it is unlikely to be explained by bias and confounding. 2. Independence: does adjustment for known confounders markedly alter the association? If not residual confounding is unlikely. 3. Specificity: is the association specific to one combination of disease or exposure? This makes causality more likely but its absence does not exclude it (as some exposures may cause many different diseases). 4. Consistency: is the association found in different study populations and across different study designs? This provides evidence against bias, confounding and chance. 5. Time sequence: is the temporal sequence correct? This is essential to be able to argue against the possibility of reverse causality. 6. Dose response: is there a graded relationship between exposure and the risk of disease? 7. Plausibility: is the causal link biologically plausible? However, not all aetiological relationships can be explained in terms of current knowledge. 8. Reversibility: can the association be shown to be diminished by a preventative experiment?

and lung cancer, asbestos and mesothelioma, radiation and haematological cancer, and sunlight exposure and skin cancer. A case–control study is a design commonly used by researchers wishing to identify risk factors for disease development. This kind of study compares the past history of exposure to the factor being investigated in a group of people who have a particular disease, with the exposure in the population at large. Those with the diseases are the ‘cases’ and those in the comparison group are ‘controls’. Some of the first classic investigations of this kind were studies in the early 1950s investigating the link between smoking and lung cancer.7 These researchers first studied the medical records of patients with and without lung cancer and compared their smoking history. A strong relationship, suggesting nine times the risk of lung cancer among smokers emerged, leading them to carry out a larger interview study questioning patients directly about their smoking history. Their next step was to conduct a longitudinal study to test their hypothesis prospectively.8 For this they assembled a cohort study of 20 000 UK male doctors and followed them over time to investigate their health.9 This allowed them to show that as well as smoking increasing the risk of lung cancer, the more individuals smoked and the longer they smoked the higher their risk of dying of lung cancer became. Smoking cessation was shown to reduce the risk. Case–control and cohort studies have also shown that mesothelioma is linked to prior exposure to asbestos, mostly of men working to manufacture and use it in shipbuilding, and insulation. The link between radiation and leukaemia was established by observing risk in children exposed in utero to X-rays used for pelvimetry before childbirth. Studies after the explosion of atomic weapons in Japan at the end of the second world war found an increase in the rates of leukaemia very soon after. Rates were found to be 150 times greater for people who had been within 1 km of the blast.

Was it something I was exposed to?

The discussion so far shows how difficult it may be to answer this question. Nonetheless, a number of factors have been clearly linked to an increased occurrence of different cancers – cigarette smoke

Measures of disease risk

In situations where the researcher has information about outcome by following up a group of people exposed to a risk factor of interest and can compare

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this to the risk in another unexposed group, it is possible to make a calculation of the relative risk or the relative rate of a disease following that exposure. The relative rate is defined as the ratio of the incidence rate of the disease in the exposed group divided by the corresponding rate in the non-exposed group. A relative rate of 1.0 indicates that the incidence rates of disease in the exposed and non-exposed group are the same, and that there is therefore no association observed between the exposure and the disease in the data. A value greater than 1.0 indicates an increased risk among those exposed to the factor. On the other hand, a relative rate of less than 1.0 means that there is a decreased risk among the exposed. The value of the relative rate depends on the time period over which the rate is calculated, which must be specified. For example, in their 20-year follow-up study of British doctors Doll and Peto found that the annual mortality rate for lung cancer per 100 000 population was 140 among cigarette smokers and 10 for non-smokers, giving a relative risk of smoking of 14.9 In some situations the researcher does not have access to complete follow-up data from a whole cohort of individuals, and may need to rely on a case–control study as already discussed. An economical approach commonly used to study rare outcomes is to select research subjects on the basis of their disease status, and question them and a comparison group of selected controls about their prior exposure to the risk factor of interest. The researcher does not know the outcome for all the people exposed to the risk factor, so rather than calculating the relative rate as in a cohort study, the odds of the disease are calculated to give the odds ratio. This can give an unbiased estimate of the relative rate. While the relative rate represents the likelihood of disease in exposed individuals relative to the unexposed, the population-attributable risk is a measure that provides information about the absolute effect of the exposure. Its value gives an indication of the number of cases among the exposed that can be attributed to the exposure and could therefore be avoided if exposure to the risk factor could be eliminated. It can therefore be used as a measure of the potential public-health impact of a particular exposure. For example, the

population-attributable risk for smoking in lung cancer is 82%. In the absence of smoking this proportion of lung cancer cases could be avoided.

Prevention and screening Could I have done anything to prevent it?

Primary prevention is the prevention of the disease by removing or avoiding the factors that are known to cause or promote its development. It is estimated that over one-half of all cancers could be avoided by removing exposure to cigarette smoke and by improving diet to include less fat and alcohol and more fruit, vegetables and fibre. Improved diet and exercise could also decrease obesity, which appears to be a risk factor for some cancers including breast, colorectal, oesophageal, endometrial and kidney cancer. Secondary prevention or screening is the prevention of disease after it has developed but before it becomes clinically manifest and begins causing problems for the patient. Tertiary prevention in the detection of disease at the earliest stage possible, when there is most chance of treating the disease and minimising its impact on either survival or quality of life. Why isn’t there screening/earlier diagnosis for my cancer?

Screening is an organised effort by a health care system to improve the outcome of a disease by reducing either the number of cases within the population or the severity of the disease in those who develop it. Screening is not the urgent referral of patients with clinical symptoms suggestive of disease, nor is it the application of tests to those in whom suggestive symptoms are discovered. Instead it is the consistent offer of a test to individuals without symptoms who are at a higher risk than other population groups of developing that disease. This screening test does not in itself diagnose the disease but simply indicates those who require further evaluation by more definitive tests. It is those diagnostic tests, not the screening test, that will determine if the disease is present. It is often assumed that screening must be a good thing because it is better to diagnose any disease

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and receive treatment for it earlier than later, but this is not always the case. A great deal depends on the natural history of the disease and the number of negative effects that the screening programme and early treatment may have. In the UK, national cancer screening programmes are in place for breast and cervical cancer. One for colorectal cancer is about to be implemented, another for prostate cancer is being considered. A careful evaluation of risks, benefits and costs is now mandatory before any screening test is introduced. One commonly used set of criteria for assessing a screening test is that developed by Wilson and Junger (see Box 4.3). Box 4.3 Wilson and Junger criteria for accepting population screening 1. The condition sought should be an important health problem. 2. There should be accepted treatment for patients with recognised diseases. 3. Facilities for diagnosis and treatment should be available. 4. There should be a recognised latent or early symptomatic stage. 5. There should be a suitable test or examination. 6. The test should be acceptable to the population. 7. The natural history of the disease, including latent disease, should be adequately understood. 8. There should be an agreed policy on whom to treat. 9. The cost of case-finding (including diagnosis and treatment of patients diagnosed) should be economically balanced in relation to possible expenditure on medical care as a whole. 10. Case-finding should be a continuing process and not a one-off project.

The first criterion for introducing a screening test is that the disease is serious. While most cancers might appear to satisfy this criterion it must also be the case that treatment during the detectable preclinical phase must result in a better prognosis than treatment given after symptoms develop. While breast cancer and cervical cancer screening appear to fulfil this, screening for lung cancer does not detect early-stage disease that can make a sufficient difference to mortality. The

prevalence of preclinical disease must also be high in the population to justify the development of the programme. The test must be inexpensive, easy to administer, valid, reliable, reproducible and cause minimal discomfort to individuals to whom it is offered. The performance of any screening test is usually described in terms of its specificity and sensitivity and its ability to produce false-positive and falsenegative results. Sensitivity is the chance that a screening test will be positive if the patient truly does have the disease. As a test becomes more sensitive, the proportion of patients who are incorrectly classified as false negative will decrease. Specificity, on the other hand, is the chance that a screening test is negative if the disease truly does not exist in an individual. A test that is highly specific will rarely be positive in an individual without the disease and will therefore produce a low proportion of patients with false-positive results. Ideally it would seem desirable for a screening test to be both highly sensitive and specific, but in reality after a certain point there is usually a trade-off between the two measures when an increase in one results in a decrease in the other. Any screening procedure will induce anxiety both in patients undergoing the test and in those who test positive and require further investigations. Investigations and treatment may themselves result in risk. It is therefore important that the overall benefit gained by those individuals eventually diagnosed and treated far outweigh any negative effects on the screened population and on those diagnosed by screening and treated without receiving better outcomes. The screening programme for breast cancer has been most thoroughly evaluated. Randomised controlled trials of mammography for women aged over 50 years show that the mortality has decreased in women offered screening compared with unscreened controls. The fact that the reduction has not been significant in all the trials has led to some controversy, but the consensus of all expert opinion is that if 70% of eligible women attend for screening there is a 25% reduction in breast cancer mortality. Seventy per cent attendance is the minimum standard for the UK screening programme, though in some areas of the country the uptake is much lower. The sensitivity

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of mammography for women aged over 50 years is around 80%, but it is far lower in younger women because their predominantly more-dense breasts make detection difficult. The specificity of mammography ranges from 82% to 97% and 6– 8% of women recalled after their first-ever screen for further tests turn out to have cancer. The age range included in national screening was originally 50–64 years, but was increased to 70 years in 2004. Women attend special centres where two-view mammography is carried out by staff dedicated to screening. The programme is subject to rigorous quality assurance according to national standards.3 Current issues for the screening service are to determine, in collaboration with cancer registries, the rates of cancers that present symptomatically between screening intervals. An issue emerging very recently from follow-up studies of the women in the early Scandinavian trials of breast screening is that of over-diagnosis. Although screening programmes lead to a reduction in the population mortality from breast cancer, they also lead to an increase in cancers that would otherwise not have presented or been treated.10,11

Clinical epidemiology Clinical epidemiology is the application of the principles, methods and findings of epidemiology to the diagnosis, prognosis, appraisal of decisions about treatment, and evaluation of care. Its focus is not on the risk of disease in the general population, sometimes called ‘public health epidemiology’, but instead on the study of patients who have already developed the disease. Its aim is to determine the factors contributing to outcome of the disease (for example, rates of recovery, disability, or death) rather than to determine what caused the patient to develop it. There is some debate about the exact definition of clinical epidemiology, and the term is also sometimes used for studies that include any kind of clinical measurement. The principles of clinical epidemiology are also similar and overlap to some extent with those of the recently developed term ‘evidence-based medicine’ – the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients.12

What are my chances of cure with this treatment?

This is one of the most obvious questions to ask, and although not all patients may directly seek such explicit information, it is certainly a question that health professionals will want to be able to answer for the patient groups they see. The difficulty of determining risk for an individual patient as opposed to risk for a group of patients applies, as described before in the section on risk (pp. 57–58). There are several ways of thinking about the survival of groups of patients, and a number of techniques can be applied to data collected about the death of patients at different points in time. The first requirement is that there is adequate follow-up information. The survival rate is the simplest expression of the survival – and corresponds to the proportion of survivors in any one group studied and followed for a particular period of time. It may also be called the cumulative survival rate, and logically this equals 1 minus the cumulative fatality rate. Survival is usually calculated for the period of 5 years after the diagnosis, though when considering diseases with a very poor prognosis, e.g. lung or brain cancer, 1- or 2-year survival rates may be used. On the other hand, where statistics have been routinely collected and held for longer periods it may be possible to calculate 10- or 20-year survival. In many cancers the 5-year survival rate is usually regarded as the rate of cure. Another very common way of presenting survival information visually is by plotting a survival curve, often using the Kaplan–Meier method which accommodates the fact that not all patients will have been followed ultimately to death. This curve starts with 100% of the study population alive at time zero – usually the date of diagnosis – and shows the percentage of patients surviving at each successive point in time before the endpoint of the study. These curves provide information about the rate of decline in the number of patients remaining alive and the different points at which patients are lost. These curves are also often referred to as crude survival curves. They are so-termed not because of their inelegance, but because they do not take into account the deaths that would have occurred in the group of patients whether or not they had been diagnosed with

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Figure 4.4 Period analysis of relative survival (1999– 2003) for female breast cancer in South East England.

Figure 4.5 Period analysis of relative survival 1999– 2003 for cancer of the lung in males in South East England.

cancer. In any group of similar-aged individuals, a number of people would have died from other causes. Information on other deaths is contained in a current ‘life table’, which summarises the combined mortality experience by age of a population in a particular period of time. From this can be calculated the survival of the diagnosed patient cohort relative to the general population. One way of understanding the relative survival is to see the general population survival – the background survival that might be expected – as running along at 100%, and to judge the drop in survival from that point to the relative survival curve for the group of interest as that attributable to having the particular diagnosis of cancer rather than to age. Figure 4.4 shows how the relative survival rate for women with breast cancer is higher than the crude survival. The difference between crude and relative survival is less pronounced for lung cancer as shown in Figure 4.5. A method of providing even more specific information is to estimate the contribution to the risk of mortality for particular groups of patients; this may include age groups, stages of disease at

diagnosis, or those presenting with particular disabilities or co-morbid conditions. The proportional hazards model or Cox model estimates the risk that a patient in any of these groups will experience the hazard (usually death) in a given period of time. As well as the nature of the survival analysis, it is important to be clear which population of patients it represents. Population-based analyses will include all patients known to have received the diagnosis in the entire resident population during the time period. This should be distinguished from a sample of patients diagnosed and treated in either primary or secondary care. Many selection factors operate to affect which patients are detected in primary care and which of these are referred on to secondary care and eventually receive treatment. Experience of seeing only patients treated in secondary care can give a distorted picture of the prognosis for a particular patient group. In addition, data from clinical trials may exclude older patients and those with co-morbidity. For example, clinical trials of one haematological cancer, myeloma, had historically

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included only patients aged under 65 years. Analysis of population data collected by the Thames Cancer Registry showed a high proportion of patients aged over 70 years, and led to the redesign of trials to determine the best treatment for this group (Steve Schey, personal communication). Another increasingly topical issue is whether survival can be compared between different small areas of residence and even different hospitals. Because fewer patients die from their disease than are diagnosed, survival analyses require larger numbers than incidence analyses. For that reason comparison between larger populations is more robust than that between smaller areas. Indeed it has been argued that the average population of size of 100 000 in a UK primary care trust is too small a unit of analysis to determine meaningful differences between trusts on a year-on-year basis. Even comparisons of larger populations covered by cancer networks may reveal differences that are due to population characteristics, such as age structure, general health, and co-morbid conditions, as well as differences in treatment policy. On the other hand, performance tables of outcome are increasingly being used by the NHS. In cardiothoracic surgery, for example, post-operative mortality is now publicly available by named surgeon. Although most clinicians wish to know how their own hospital performs and how their patients survive, there are many concerns about the potential that over-simplistic or incorrect analyses have to damage public and patient confidence in individual hospitals. The chief methodological concern about published analyses is the degree to which referral patterns and case mix (prognostic factors) are, or can be, taken into account in assessing outcome. Co-morbidity is a major consideration in the clinical decision to refer and treat patients. It seems very likely that many specialist cancer centres treat patient populations that are skewed in two directions – towards those with the very best prognoses and towards those with complex problems that may have the worse prognoses. The problem is of whether like is being compared with like, as well as whether data can be obtained on all the possible factors of relevance. Whether and when it will be sensible to undertake these analyses will be a challenge for the cancer community as more data on individual

patients are collected, and there is increasing pressure for more information to be made available. Should I undergo this treatment?

The gold standard for the evaluation of cancer treatment is the randomised controlled trial. This is a planned test of a new treatment which compares the outcome in terms of symptom relief, quality of life, and survival for patients that receive and do not receive it. The key strength of this kind of trial is that, with their consent, patients are randomised to receive either the new treatment or the comparison treatment. This randomisation means that patients with different prognostic factors (that might affect the outcome after treatment) are likely to be distributed evenly between the two groups. This makes it much more likely that any difference observed is the result of the treatment being tested and not other factors. Trials require careful design and monitoring to ensure that they are ethical, feasible, acceptable for patients, measure the relevant range of outcomes, are large enough to detect a significant difference, and are stopped at the right time (i.e. if adverse effects emerge or the answer to the study question becomes clear beyond doubt). Cohort studies of patients with a particular diagnosis can also provide relevant information for patients. They can, for example, tell them about their chances of return to work, the time they might expect to spend free from disability, or symptoms they may experience. However, the degree to which findings from cohort studies can be generalised will always depend on the breadth of the initial selection of patients and the adequacy of their follow-up. Because selection may be operating in determining which patients are included into cohort studies, and because there is no comparison group, cohort studies are not the best way to answer questions about the effectiveness of treatment. Again, predicting the outcome for the average patient does not easily translate into a prediction for any particular individual patient. What does this new study mean for me?

The media often report the results of new treatment trials uncritically and somewhat overoptimistically in a way that may lead patients to expect

Cancer epidemiology 63

new treatments to be immediately available. Equally, the results of epidemiological studies may be reported as showing a relative increased risk of cancer occurrence in relation to a factor that is significant but represents a very small absolute increase in risk for any individual. Being asked to comment on a recently published study can therefore place health professionals in a difficult position. A good start is to explain a few important principles such as the need to consider the population studied or the groups of patients included, the likely generalisability of findings, and the need to confirm findings before practice is changed. However, for more detailed questions it is probably best to direct patients to more authoritative sources of information, such as fact sheets produced by major charities, and to provide reassurance that robust processes exist in the UK to ensure that new available evidence is discussed, debated and put into practice as soon as possible.

Public health policy Although many researchers work with the hope that their findings will lead to improved public health policy or cancer services, attention to the quality of research evidence and ensuring its publication is rarely sufficient on its own to cause this. Innovators may use new knowledge to change their practice, and by their actions influence others, and in this way a new practice may diffuse throughout a health care system. However, this is usually a slow and patchy process. Creating a faster and more consistent change across an entire health care system requires a much more deliberate and organised effort. Getting evidence into practice requires a number of different events to occur. Evidence needs to be brought together, independently compared and considered, and a decision made about costs and benefits of putting it into practice. Political action needs to make that change a priority, release the resources to make change happen, decide what the mechanisms will be, over what timescale the change will occur, and how this will be monitored. Over the past 10 years there has been a consistent effort to do just this for cancer prevention and care in the UK.

What is this government/hospital/ primary care trust/cancer network doing to improve things?

The NHS Cancer Plan was published in 2000, and set out a range of specific objectives and targets linking prevention, diagnosis, treatment, care, and research for the first time.13 It followed the 1999 NHS Plan – a 1-year plan to modernise the NHS by providing more staff and equipment to make services more effective and responsive to patient needs. It was also a practical implementation plan for the earlier Calman–Hine Report of 1995 that had set out the need for more consistent and specialised cancer services across the country.14 The NHS Cancer Plan took forward the government’s earlier 1997 public health agenda to cut the death rate in people aged under 75 years by at least onefifth and to reduce adult smoking rates from 28% to 24% by 2010. In addition it set out to narrow the gap in cancer mortality and survival between the individuals living in most- and least-affluent areas, aimed to reduce smoking rates among manual groups from 32% in 1998 to 26% by 2010, and to set local targets for the areas with the highest rates. This was judged important because both the overall incidence and mortality rates of cancer are highest in areas of social deprivation. Although mortality is declining in the UK in all social groups, the absolute difference between affluent and deprived areas remains the same, or may even increase as those living in more affluent areas take up screening, stop smoking and change their diet earlier than those living in deprived areas. To reduce the gap, public health action may need to focus on people living in more deprived areas, and in 2004 an inequality target was set to reduce the cancer mortality gap between the richest fifth and the poorest fifth of primary care trusts by at least 6%. It is intended that this will be met by encouraging people to give up smoking, to present earlier to their general practitioners with symptoms, and to attend more regularly for screening, by extending the screening programme to 65–70-year-old women and ensuring the use of referral guidelines and better access to diagnostic tests for general practitioners.14 Smoking has proved a controversial public health issue to tackle but there has been gradual policy progress including a ban on advertising,

64 Cancer, care, and society

stronger health warnings on cigarettes, antismoking campaigns, and more services to help people give up smoking. Most recently a ban on smoking in public places was introduced after much discussion, evidence of the success of such policies in parts of the US, and a free vote in the House of Commons. An initial proposal for a partial ban, exempting pubs that did not serve food was generally felt to disadvantage those living and working in pubs in more-deprived areas, which are more likely not to serve food. In terms of other public health measures the previous NHS Plan had already focused on the role of diet, developing the five-a day programme encouraging people to eat more fruit and vegetables, and had developed a scheme to give free fruit to 4–6 year olds at school. The NHS Cancer Plan extended the breast cancer screening programme to include all women aged 65–70 years, and made it available to women over the age of 70 years on request. The cervical cancer screening programme was upgraded, pilots for implementation of colorectal cancer put in place, and more information provided for men about PSA testing to enable them to consider the costs of benefits of the test before making their choice.13 To deliver better cancer services, The NHS Cancer Plan sought to strengthen the ability of cancer networks to co-ordinate care and implement policies for better care. A major focus has been to decrease delay in diagnosis and treatment by setting targets for the time people waited after urgent referral or diagnosis to begin their treatment – the ultimate gaol being that no one should wait more than one month from urgent referral. Extra funding for scanners for diagnosis, treatment machines for radiotherapy, and the management of system change was also made available.14 Another policy focus has been the development of clear standards for care based on best available evidence. Following the Calman–Hine Report of 1995,15 this was carried by the Improving Outcomes Guidance of the Clinical Outcomes Group of the Department of Health. Since 2000 the National Institute for Clinical Excellence (NICE) has developed and revised subsequent guidance. For cancer the guidance takes the form of a review of the evidence for effective care

carried out by an independent academic group, and a set of recommendations developed by a multidisciplinary expert group informed by wide stakeholder consultation. Such sets of guidance have now been produced for the most common cancers, and those for less common ones will be published soon after. Cancer networks are charged with developing local plans to implement these recommendations. Is the UK doing as well as countries of similar economic status?

A major stimulus for these UK policy initiatives was the finding from European cancer registries study on cancer patients’ survival and care (EUROCARE) studies that survival for patients with many of the major cancers in the UK lagged behind that for patients in the rest of Europe. It has been unclear exactly what the reason for this difference is but it is unlikely that it represents a chance finding. Whether it is a difference in stage at presentation, a difference in treatment given, or difference in the way the data are collected is unclear.16 The assumption underlying policy initiatives so far has been that it may represent the presentation of patients at a later stage of the disease and a need for more consistent and organised treatment. The findings of the EUROCARE collaboration have also led to significant changes in cancer policy for different cancers in Denmark, Norway and Italy.16 How is information about cancer routinely collected and used in the UK?

As already mentioned, the Office for National Statistics collates data collected by the nine cancer registries in England and Wales and publishes annual statistics on cancer incidence and mortality. Annual data on incidence and mortality, and analyses of survival trends are also published for Scotland and Northern Ireland. The basis of these figures is data collected by cancer registries from the medical records and pathology records in hospitals, other electronic sources of data from hospitals, hospices, private hospitals, cancer screening programmes, other cancer registries, primary care, nursing homes, and death certificates. The registration dataset includes basic demographic information on age, sex, ethnicity, place of residence,

Cancer epidemiology 65

information about the cancer including its site, its morphology and stage, and data on the first hospital the patient attended, where they received their first surgery, radiotherapy, hormonal, and chemotherapy treatment. This data is collected and coded by trained data officers and quality assured as it is entered to the cancer registry database. Registries follow up patient records for the first 6 months after diagnosis but do not actively collect follow-up information after this time. They receive death certificates for residents in their area who die from cancer, from the Office for National Statistics via the NHS Register. Registries never contact patients directly to check information or gather additional information for research. All data are kept securely and only reported as aggregate figures in reports. Until now patients have not been asked to give consent for their data to be collected and stored in the cancer registration dataset. Instead their consent has been implied and cancer registration is covered by section 60 of the Health and Social Care Act 2001 that exempts registries from having to seek consent from each individual on the basis that its purposes are in the interests of patients or the wider public. Currently, a leaflet explaining cancer registration is being piloted to ensure that patients do have information about the uses of these data, how their confidentiality is maintained, and how they may withdraw their details if they wish. The UK has the most comprehensive system of cancer registration in the world, and there has been some concern that if a large number of individuals chose to opt out of the process the quality of the data and their usefulness will be compromised. On the other hand, asking for explicit consent around the time of diagnosis could place an additional information burden on patients as they come to terms with the news of their diagnosis and are asked to make important decisions about treatment. Much cancer research in the UK has made use of these aggregate cancer data with identifiable information removed. Identifiable data are currently only released back to organisations or individuals treating the patient, to the patient at their request, or to bona fide researchers who can justify the use of identifiable data, and have approval from a relevant research ethics committee and received a section 60 exemption.

Although the UK has the most comprehensive data on cancer in the world, it is increasingly recognised that more could be done to use these data effectively. Many of The NHS Cancer Plan targets require good information to monitor them. National plans for cancer intelligence aim to link cancer registration data to those contained in the hospital patient administration system and other datasets, and to obtain better information on ethnicity and staging of cancer. More detailed information for patients on the epidemiology of individual cancers in the UK can be obtained from Cancer Research UK which produces a series of clear summary fact sheets for patients and professionals based on cancer registration data. Further information may be also obtained from the other organisations listed in Box 4.4. Box 4.4

Sources of further information

• Cancer Research UK www.cancerresearchuk.org • Cancerbackup www.cancerbackup.org.uk • Macmillan Cancer Support www.macmillan.org.uk/ Home.aspx • National Cancer Screening programme www.cancerscreening.nhs.uk • National Institute for Health and Clinical Excellence www.nice.nhs.uk • UK Association of Cancer Registries www.ukacr.org • Office for National Statistics www.statistics.gov.uk • National Cancer Research Institute www.ncri.org.uk • International Association of Cancer Registries www. iarc.com.fr

Most developed countries have been able to invest in the development of population-based registries collecting standard datasets and methods of analyses over many years. These may cover the whole nation or defined regions from which findings may be extrapolated to other areas. Countries from Africa, Central and South America, North America, Asia and Europe contribute to a compilation of cancer incidence across the world.17 The International Association of Cancer Registries provides training and software support to individuals in countries aiming to develop their own registration system.

66 Cancer, care, and society

Acknowledgements We thank Professor David Strachen for his clear teaching summaries of epidemiology to which we have referred in preparing this chapter, and to Professor Henrik Møller, Director of the Thames Cancer Registry for his comments on an earlier version of this chapter.

References 1. Fritz A., Percy C., Jack A. et al. (eds.) (2000). World Health Organization. International Classification of Diseases for Oncology, 3rd edition. Geneva: World Health Organisation. 2. Quinn M., Babb P., Brock A., Kirby L. and Jones J. Office for National Statistics. (2001). Cancer Trends in England and Wales 1950–1999. London: The Stationery Office. 3. Toms J.R. (2004). CancerStats Monograph 2004. London: Cancer Research UK. 4. Thames Cancer Registry. (2004). Cancer in South East England 2002. London: Thames Cancer Registry. www. tcr.org.uk (accessed 23 July 2007). 5. Hennekens C.H. and Buring J.E. (1987). Epidemiology in Medicine. Boston: Little Brown and Company. 6. Last J.M. (1998). A Dictionary of Epidemiology. New York: Oxford University Press. 7. Doll R. and Hill A.B. (1950). Smoking and carcinoma of the lung: preliminary report. British Medical Journal 2, 739–748. 8. Doll R. and Hill A.B. (1971). A study of the aetiology of carcinoma of the lung. British Medical Journal 2, 1271.

9. Doll R. and Peto R. (1976). Mortality in relation to smoking: 20 years observation on male British doctors. British Medical Journal ii, 1525–1536. 10. Zackrisson S., Andersson I., Janzon L., Manjer J. and Garne J.P. (2006). Rate of over-diagnosis of breast cancer 15 years after end of Malmö mammographic screening trial: follow-up study. British Medical Journal 332, 689–692. 11. Moller H. and Davies E. (2006). Commentary: Overdiagnosis in breast cancer screening. British Medical Journal 332, 691–692. 12. Sackett D., Richardson W.S., Rosenberg W. and Haynes R.B. (1997). Evidence-based Medicine. How to Practice and Teach Evidence-based Medicine. New York: Churchill Livingstone. 13. Department of Health. (2000).The NHS Cancer Plan: A Plan for Investment, a Plan for Reform. London: Department of Health. 14. Department of Health. (2004). The NHS Cancer Plan and the New NHS: Providing a Patient-centred Service. London: Department of Health. 15. Department of Health. (1995). Calman–Hine Report. Expert Advisory Group on Cancer. A Policy Framework for Commissioning Cancer Services. London: Department of Health. 16. Coleman M.P., Gatta G., Verdecchia A. et al. and the EUROCARE Working Group. (2003). EUROCARE-3 summary: cancer survival in Europe at the end of the 20th century. Annals of Oncology 14, v128–149. 17. Parkin D.M., Whelan S.L., Ferlay J., Teppo L. and Thomas D.B. (eds.) (2002). Cancer Incidence in Five Continents. Volume VIII. Lyons: International Agency for Research on Cancer.

CHAPTER FIVE

Developments in the management of cancer Alastair Munro

The title of this chapter is carefully chosen. It reflects the facts that not all developments are new and that there is more to cancer than treating it. Cancer does not exist in isolation, nor does its management. In terms of managing cancer we have to consider not just how we might try to control cancer, but also the context within which our efforts take place. The things we do are complex, and so is the context.

THE CONTEXT OF CANCER MANAGEMENT Cancer affects individuals – but individuals exist in society and therefore any consideration of cancer that fails to place it within a social and economic context is inevitably incomplete. These issues are dealt with at length in other chapters in this book and are simply mentioned here as a reminder that developments in cancer will be affected by the times in which we live. Science and medicine are, after all, cultural activities.

Developments in the context of cancer management In 1971 Richard Nixon famously declared war on cancer. Subsequently he lost the war, his reputation and the presidency. The main consequence

of his declaration was to make the cure of cancer a high priority for medical research in the US and throughout the world. Society was encouraged to believe that cancer was a scourge that had to be, and could be, controlled. The application of science would solve the problem. Despite enormous investment over more than 30 years, the results of these efforts, from the point of view of society as a whole, have been modest. Given these modest achievements, we cannot assume that society will continue to fund cancer research at its current levels. Governments will demand value for money. There is also the important question of, if resources are to be limited, what research questions should take priority. The Macmillan listening study showed that patients put a high priority on research into the impact cancer had on the lives of patients and their families.1 This is in direct distinction to the emphasis on basic scientific research that has applied over the past decades. One consequence of this mismatch will be a continued increase in the number and importance of those charities (Macmillan Cancer Support, Marie Curie, Maggie’s Centres) that attempt to support and inform patients and families affected by cancer. We should remember that even victories leave casualties and refugees in their wake. Changing demographics

Cancer is a disease of ageing cells and, in the developed world, we are an ageing society. As people

68 Cancer, care, and society

live longer, the prevalence of cancer rises and so, relative to other diseases, does cancer-related mortality. This leads to a series of gloomy prognostications concerning the ‘epidemic’ of cancer in the elderly. All of which ignores the simple fact that most of us accept that we have to die of something, and that not every 85 year old wants to cling desperately to life at any cost. We know surprisingly little about the attitudes of older people to the management of cancer: we tend to manage older patients as if they were simply slightly decrepit versions of their younger selves. All of us involved in managing patients with cancer need to have some knowledge of how to deal with the problems of older people facing cancer. The imperative to cure, felt by many oncologists, may be at odds with the values and hopes of many of their older patients. We will need to help older people explain themselves to us and, in return, we need to explain our interventions to them in terms that are neither dishonest nor intimidating. We need to design management policies that are both effective and acceptable to older patients. The business of cancer

The relationship between medicine and society is changing. In order to attract publicity and resources medical researchers advertise their ‘breakthroughs’ in a way that, previously, would have been unthinkable. Drug companies use newspapers and television for product placement: even mediocre remedies are hailed as ‘important advances’. The public is whipped up into a frenzy of expectation, only to be disappointed when the so-called breakthrough fails to have any demonstrable impact on what happens to their nearest and dearest. If, despite the positive messages from every news bulletin, they are told that they, or their friend or relative, will die from cancer, it is only natural that people will look around for someone to blame: sometimes themselves; sometimes multinational corporations; sometimes the health care system; sometimes individual practitioners. This, in turn, leads to defensive behaviour by those who consider themselves vulnerable to blame. Foods are suddenly removed from supermarket shelves because some minor additive has caused cancer in rats; family doctors send patients with minor symptoms to surgeons for investiga-

tions (‘just in case’) to exclude cancer. Clinical guidelines are used in a spirit of corporate protection rather than as a means of ensuring that each individual is offered the management that is most appropriate for them. Overall, there is a paradoxical paralysis: paradoxical, because action is commoner than reflection; paralysis, because thought is dominated by fear. These trends will develop and strengthen over the next decade. Cancer management will operate within a business model. Governance, economics, protocols, and risk assessments will dominate practice. Disasters will be less likely, but the opportunity cost could be a depersonalisation of care at every level, and from every perspective. The belief that money conquers all

The market of spurious claims has another consequence. The notion arises that money is the solution to every problem. International comparisons are particularly invidious in this respect. The results of cancer treatment may appear to be better in the US, but this is not necessarily a result of greater expenditure or competence but may simply reflect the fact that we simply do not know very much about how cancer affects the millions of Americans with limited access to health care. People come to believe that simply by paying money (for that wonder diet, for ‘going private’, for the new drug available for purchase on the internet, for a whole-body scan) every problem can be solved. A belief put most succinctly, in the context of AIDS, by the American writer Harold Brodkey: ‘I want Clinton to save my life’. As if money and power were all that mattered. With greater regulation of clinical practice, with costs for cancer management rising, with the widening of the socioeconomic chasm between those who have in abundance and those from whom what little they had has been taken, the number of individuals seeking cures on the open market will increase. For every person willing to pay, there is always someone eager to be paid. The need for an evidence base

The increased regulation of cancer services is not just about containing costs, it is also about raising standards. The need to demonstrate objectively that any given intervention works is an essential

Developments in the management of cancer

part of this process. There should be evidence to support the use of an intervention: habit and custom are not enough, precedent is no guarantee of effectiveness.2,3 The evidence-based approach applies just as much to nursing, and to oncology, as it does to any other branch of clinical activity.4–7 Systematic reviews of the available data from randomised trials, for example those published in the Cochrane Library,8,9 are a useful source of evidence upon which to base clinical practice.

Developments in global aspects of cancer management Cancer in the developing world

Cancer is a global problem: 11 million people are diagnosed with cancer each year, the figure is expected to rise to 16 million by 2020.10 All human societies are affected by cancer, there are, however, major international differences in the incidence of various forms of cancer and in the resources available to deal with them. More than 50% of the 7 million deaths from cancer each year are in the developing world,11 countries in which resources for diagnosis and treatment are scarce. It costs £21 000 per annum to treat a patient with herceptin for advanced breast cancer; the annual per capita budget for health care in Uganda in 2001 was £10.12 Even superficially similar tumours have very different presentations and management; oesophageal cancer in Johannesburg is a very different disease from oesophageal cancer in Birmingham. The World Health Organisation is currently preparing a strategy for cancer control which is based on advice, reports, and consultation rather than action. Unless and until the economies of the developing world are able to spend more on the health care of their citizens, cancer care for the majority of the world’s inhabitants will be a theoretical possibility rather than a reality. In the meantime, harsh decisions have to made: morphine, rather than palliative radiotherapy, is the way to manage cancer-related pain in the developing world. In the meantime, at least we have a reasonable statistical picture of what is happening, thanks to the Globocan initiative, sponsored by the World Health Organisation and run from the Inter-

69

national Agency for Research on Cancer (IARC www.iarc.fr/). We can track the epidemic of HIVrelated malignancies, we can look at epidemiological patterns of disease in space and time, and use the information to target scarce resources appropriately and to refine our knowledge of the interplay between inheritance and environment and how this might modify the susceptibility of a population to specific types of cancer. The Breast Health Global Initiative (BHGI) has developed guidelines for the management of breast cancer in countries where resources for health care are scarce.13 Such approaches will not bring the care offered to a villager in sub-Saharan Africa up to the level of that provided to a suburban Swede, but will help ensure that the money spent on the management of breast cancer in the developing world is spent effectively. This is important since, as citizens of the developing world adopt more Western lifestyles, the incidence of breast cancer increases,14 and, unless there are effective programmes in place to deal with this increase, there will be a disproportionate increase in mortality from breast cancer in the developing world. International differences

One of the main stimuli to the reorganisation of cancer services in the UK was the apparent demonstration that, in terms of international league tables of cancer survival, Britain was behind many other European countries (see Figure 5.1). The primary source for this suspicion was the European Cancer Registries study on cancer patients’ survival and care (EUROCARE study).16–18 Unfortunately, although widely quoted, this study has several flaws. League tables inevitably oversimplify. Paradoxically, health care that is in overall terms better, may produce outcomes that are artefactually worse than those claimed by less-comprehensive systems of cancer care. In the UK in general, and in Scotland in particular, we have excellent data on cancer incidence and outcome for the entire population. We know who gets cancer, when they get it and what happens to them. In contrast, we know remarkably little about the management of cancer amongst the 45 million citizens of the US who do not have health insurance. If it takes money to

70 Cancer, care, and society England & Wales EU average

Lung

Colon

Prostate

Breast 0

10 20 30 40 50 60 70 80 90 100 Survival (%)

Figure 5.1 Cancer survival in the early 1990s: England and Wales lag behind Europe. Reproduced from The NHS Cancer Plan.15 The graph suggests that, compared with the EU average, patients with cancer of the colon in England and Wales have a 5-year survival rate that is 10% less than the EU average. Data are not age standardised and the EU average may be overestimated and the British figures underestimated.

make a diagnosis then the poor are less likely to be diagnosed. If poorer people are never diagnosed then national statistics will, in comparison with a nation in which every patient with cancer is recorded, reflect the experience of a more affluent population. Since, for a variety of commonsense reasons,19 well-off people with cancer are more likely to survive than poorer people with cancer, the result will be that the figures for cancer survival will be worse from the country with universal registration of incidence and outcome. The best results for cancer treatment will come from countries where all new patients are registered, where patients with poorer prognosis are lost to follow-up, and where all patients who are not known to have died from cancer are assumed to be cured. This is how some Swiss cancer statistics may have been derived and, unsurprisingly, Switzerland has amongst the best cancer survival statistics in Europe. The Organisation for Economic Co-operation and Development (OECD) has recently published a careful and detailed comparative analysis of the quality of health care in the developed world (see Figure 5.2). They used 13 key indicators of quality, five of which are directly related to cancer management.20 The OECD data, in contrast to the

data shown in Figure 5.1, suggest that, in comparison with other developed countries, survival for patients with colorectal cancer is not significantly worse in the UK. Rates of screening for breast cancer and cancer of the cervix are higher in the UK than they are in France or Italy, survival from breast cancer and cancer of the cervix is higher in the UK than it is in France or Germany. There is nothing in the OECD report to suggest that, when it comes to cancer management, and compared to other countries in the developed world, citizens of the UK are at any particular disadvantage. This is, of course, a highly political issue.

Developments in the economic aspects of cancer care New interventions for all – affordable reality or the fantasy of the profligate?

The management of cancer is becoming increasingly expensive. New technologies for imaging or screening such as magnetic resonance imaging (MRI) and positron emission tomography (PET) scanning rarely substitute for the old, they are usually supplementary. The introduction, in the UK, of the National Institute for Health and Clinical Excellence (NICE) has, perhaps inadvertently, given us an insight into what one government in the developed world believes is a price worth paying for new technology in the management of cancer. The answer is simple: an intervention will be considered for funding if it costs less than about £30 000 per quality-adjusted life year (QALY) gained as a result of its introduction. This is, however, only part of the answer to the question ‘What are we, as a society, prepared to pay for developments in cancer care?’. The issue of the multiplier has also to be addressed. A new drug used to treat a rare tumour might cost £22 000 per QALY and £15 000 per patient treated. If there were only 150 patients with that rare tumour in the UK each year, then the total bill would be £2.25 million per annum. If, however, the drug, again at a rate of £22 000 per QALY, was to be used in 35% of patients with lung cancer each year in the UK, then the total annual cost would work out at 0.35 × 37450 × 15000 =

Developments in the management of cancer 0%

20%

40%

60%

80%

71

100%

Australia Canada Czech Republic (f) Czech Republic (m) Denmark (f) Denmark (m) Finland France (f) France (m) Germany (f) Germany (m) Iceland (f) Iceland (m) Ireland Italy Japan (c) Japan (r) Netherlands (c) Netherlands (r) New Zealand Norway Sweden Switzerland (f) Switzerland (m) UK USA

Figure 5.2 Organisation for Economic Co-operation and Development (OECD) data.20 Five-year survival for colorectal cancer (2006) in the developed world. (m), men; (f), women; (c), colon; (r), rectum.

£19.7 million. Set against a total budget for cancer drugs in the UK of less than £200 million, this one intervention could cost 10% of the available budget and would, in overall economic terms, be unaffordable. It is not easy to see a way forward that is both equitable and effective. Rather than give expensive interventions to all patients with a common tumour, it makes both clinical and economic sense to try to identify, before treatment, those patients who are going to respond and those who will not. The drug would then be given only to

those likely to benefit, thus reducing the multiplier. The use of trastuzumab for breast cancer is an example of this approach. Can we afford to allow people to give up smoking?

The economics of tobacco use are complex, the health consequences are straightforward: around 60% of lifelong smokers will die from smokingrelated diseases. In one sense, smokers are a bargain. They smoke, pay taxes, retire, and promptly die. There may be some costs associated with their final

72 Cancer, care, and society

illness but these are offset by savings in pension payments and the fact that they do not survive long enough to develop age-related illnesses. As initiatives to persuade people not to smoke gradually have an impact, there will be a delayed decrease in smoking-related mortality. From a government’s point of view the problem is this: as soon as people stop smoking the revenue from tobacco taxation falls, however any savings in the costs of medical care will take several decades to percolate through. There is immediate loss of revenue, but any savings are deferred and, as mentioned above, the costs of providing pensions may, ultimately, be greater than the costs associated with treating smoking-related illness. (see Box 5.1). Box 5.1 The economic relationship between smoking and health care in the UK Cost to the UK health system of managing smoking-related illness: £1.5 billion per annum Cost to the UK economy of lives lost from smoking: £80 billion per annuma Tax revenues raised from duty on tobacco: £8 billion per annum Proportion of tax revenue raised from taxes on tobacco in the UK: 3.3% Cost to UK exchequer of tobacco smuggling: £2.5 billion per annum NHS annual budget: £70 billion a

the figure of £80 billion is based on a value of around £700 000 for a human life. Even if we valued life at 10% of this, smoking-related deaths would cost the UK £8 billion per year in lost lives.

The clear message is: we can afford to persuade people to stop smoking, we should try to persuade people to stop smoking, and any short-term losses will be offset by long-term savings. Even if the economic arguments were unconvincing, there would still be a moral imperative. Smoking causes misery and hardship to millions and it is morally dubious to do anything that encourages the habit.21

Can we afford not to screen for cancer?

Principles of screening Screening programmes, in which asymptomatic individuals from the general population are tested to see whether or not they have cancer, may reduce mortality related to cancer. The assumption is, that by diagnosing the disease at an earlier stage, treatment is more likely to be successful. The choice of outcome measure for a screening programme is important. It is not ‘fewer patients with advanced disease’ or ‘more patients suitable for treatment’ or ‘patients diagnosed by screening lived longer’. All of these measures are subject to bias. The only relevant criterion for judging the success of a screening programme is whether or not the programme reduced mortality from that particular cancer in the population as a whole. The evidence in favour of screening for cancer of the cervix is compelling. The evidence in favour of screening for breast cancer is somewhat less compelling. The evidence suggests that screening for colorectal cancer using faecal occult blood tests may significantly decrease mortality from colorectal cancer.22 A national screening programme for colorectal cancer has already been launched in Scotland and there are also plans to introduce a similar programme in England and Wales.23 One of the problems with screening for cancer is that you may detect disease at a stage for which, if left untreated, there is no experience of its behaviour. DCIS (ductal carcinoma in situ) is now recognised as a pathological entity, largely as a result of mammographic screening for breast cancer. Although this condition is managed as if it were inevitably premalignant, there is no absolute proof that it is. There is an argument that breast screening leads to over-treatment of many women and that this over-treatment may compromise the effectiveness of mammographically based breast screening as a means of reducing mortality from breast cancer.24–26 Similar controversy surrounds screening for prostate cancer using prostate-specific antigen (PSA). Are all the cancers detected by PSA screening clinically relevant? Which is worse, the threat and disruption caused by the so-called cancer, or that caused by the (perhaps unnecessary) treatment given to men with screen-detected tumours? The position is even more complicated when it comes to screen-

Developments in the management of cancer

ing for lung cancer. Early tumours can be diagnosed when high-risk populations are screened using low-dose chest computerised tomography (CT). The problem is that many benign lung lesions are also detected. Although CT-based screening for lung cancer may, ultimately, become a sufficiently reliable screening test to be used for population-based screening, the currently available evidence suggests that it should not be used outwith a properly designed clinical trial.27 The issue of quality control is crucial to the conduct of a screening programme. If the screening test is not applied in a consistent and reproducible way, then the results may be misleading – causing problems with both false-positive and false-negative results. This is one of the more important arguments against ad hoc screening. Nevertheless, it is likely that demand for ad hoc screening will be driven by consumers: ‘I want a cancer test’. The nuances of predictive value and the sometimes limited ability of tests to exclude particular diagnoses may be lost in the stampede to be tested. The economics of screening for cancer There are two main problems with the economics of cancer screening: the fallibility of screening tests and the problem of the multiplier. Screening tests are not 100% accurate, there are false-negative results (cancers missed) and false-positive results (the presence of cancer is erroneously suspected in someone who is entirely well). If a screening test is negative then a patient who actually has cancer may be falsely reassured by their test result and ignore early symptoms of the disease. In someone who is completely well, but whose screening test is falsely positive, we are in the very difficult position of having to prove the negative. This may involve invasive and potentially dangerous procedures, quite apart from the needless worry associated with actually being well but being told that cancer is suspected. The problem of the multiplier simply has to do with the fact that if we are screening a whole population then even a test that is inexpensive (say £5 per test) becomes a major expenditure when applied to 10 million people (a capital investment of £50 million for the test alone). If the false-positive rate is 0.1% then, on a population of 10 million tested, this translates to

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10 000 healthy people who are exposed to the inconvenience, expense and psychological trauma associated with having to prove that they don’t actually have cancer. Screening for cancer may increase its incidence. Some screen-detected conditions, such as in situ changes in the breast or cervix, may be selflimiting – never destined to develop into invasive life-threatening illness. However, once they are detected by a screening programme they become illnesses that require treatment. Unsurprisingly, this treatment is usually highly effective. Whether, overall, we improve the health of the population by this type of approach is a controversial issue and lies at the root of much of the debate concerning the effectiveness of using mammography to screen for breast cancer.24–26 There are potential solutions. One is to use the power of molecular biology to improve the accuracy and precision of screening tests; another is to use combinations of simple tests for screening, rather than to rely on a single fallible test. We would use the power of computers and artificial intelligence techniques to work out that combination of test results that most accurately predicts the presence (or absence) of cancer. Another way to improve the effectiveness of screening is to target the screening test to those most at risk. This effectively raises the prevalence of cancer in the screened group and will, thereby, for any given level of test performance, improve the predictive value of a test. If you were using endoscopy to screen for oesophageal cancer in Sweden, and using a criterion of a body mass index (BMI) of 25 kg/m2, you would have to perform 2200 endoscopies to detect one cancer in a population of obese men with reflux symptoms. If you raised the criterion for obesity to a BMI of 30 kg/m2, then you would only have to perform 600 endoscopies to detect one cancer.28

Developments in the organisation of cancer care The centralisation paradox and the rise of the multidisciplinary team

The centralisation paradox is straightforward: everybody wants to be treated as near as possible

74 Cancer, care, and society

to their home; everybody wants to be treated by experts. The problem is obvious: since you cannot have an expert in every street, how do you ensure that patients receive the best possible care without having to travel excessive distances for treatment? The Calman–Hine report addressed this issue in the UK and came up with a series of recommendations: cancer specialists should concentrate on managing only two or three types of cancer (site specialisation); there should be cancer centres offering all specialist cancer services, and each cancer centre should be linked to one or more cancer units which would provide some, but not all, cancer services; there should be close links and co-operation between primary care and hospitalbased services.29 The National Cancer Plan further developed these recommendations and required that each patient with cancer should be discussed by a multidisciplinary team (MDT) with specific expertise and interest in that particular type of cancer.15,30 Cancer care in the UK is, nowadays, managed largely according to the principles set out in the Calman–Hine report.29 There are over 30 cancer networks and the average population served by each network is 1.5 million. The original Calman– Hine proposal was that all radiotherapy services should be concentrated in the cancer centres. This has proved unpopular with both patients and staff,31 and we have now moved to a model of devolved radiotherapy services.32 Attendance at MDTs is now built into the job plans of pathologists, radiologists, surgeons, oncologists, and clinical nurse specialists. There is interesting prescriptive guidance on the requirements for multidisciplinary teams,33 but very little evidence upon which to base the efficient and effective conduct of such teams. There is some evidence that the introduction of a MDT may influence survival. In Glasgow, the median survival for patients with inoperable non-small-cell lung cancer increased from 3.2 months to 6.6 months following the introduction of the MDT. The improvement appeared mainly to be due to a higher proportion of patients being treated with chemotherapy.34 Our own, unpublished, data from Tayside shows that, for patients with node-positive colorectal cancer, the 3-year survival increased from 37.5% to 51% following the formation of the MDT.

Blurring professional boundaries

Increased demand for cancer services has provoked some rethinking of professional boundaries. Nurses and pharmacists now prescribe chemotherapy and run clinics, radiographers prescribe and plan radiotherapy.35 Many of the roles traditionally taken by doctors have been taken on by others. This trend will, no doubt, continue, driven both by economics and the desire of non-medical professionals to make the best use of their education and talents. New approaches to training will be required. We will move beyond the competency-based approach that underpins much current practice, and move towards more generic skills: the ability to adapt personal roles to changing circumstances; the ability to function in a team; the ability to acquire new skills rapidly; the ability to view a substantive post as an opportunity for further learning, rather than as a career destination. This inevitably leads to a devaluation of what we might call ‘craft skills’: the ability, gained through learning and experience over many years, to perform a particular set of tasks appropriately and competently.36 Education is the key to many of the achievable developments in cancer management. Multiprofessional education for undergraduates is one method whereby mutual respect between professions may be fostered,37 but not all professionals will have had the benefit of this approach to training. Electronic learning using web-based virtual lectures, tutorials and online assessments will further blur the boundaries between professions and will circumvent some of the difficulties that have arisen during previous attempts at multiprofessional education.38,39 Information technology

Computers are a ubiquitous presence in hospitals. There are clinical databases, prescribing databases, radiotherapy systems, laboratory systems and electronic imaging storage and retrieval systems. Few of these systems communicate with each other and only a small proportion of the vast amount of stored data is ever interrogated intelligently. A Martian looking at a modern hospital would see doctors and nurses as the servants, messengers carrying information between the masters, the computers. This will not continue. As technology

Developments in the management of cancer

becomes portable, and as wireless networks become feasible, we ought to be able to use computing equipment properly – at the bedside or in the clinic and in real time. Patients may also use computers and mobile technology (such as mobile phones) to communicate with those caring for them. Email and text messaging offer a powerful means for communication between patients and the clinical teams. Computer-assisted assessment of toxicity offers a means whereby patients can indicate what their real concerns are. It is important that older people are not left out of this process of electronic liberation: acceptability of computer systems to older patients must be part of the design specification.40–42 There is a vast amount of information about cancer and its management on the internet. Typing ‘cancer’ into Google produces 460 million hits; ‘cancer treatment’ 13.2 million hits; ‘cancer research’ 51.3 million hits. Some of this information is useful and true, much of it is disguised advertising, most of the rest is just plain crazy. The problem for people affected by cancer who wish to use the internet as a source of information is that they have no idea how to sort the true from the false, the advertising from dispassionate appraisal, the sane from the loopy. In the future, helping patients to navigate the labyrinth that is the internet will be an important part of cancer management. Most patients with cancer actively seek information about their disease and its management. We need to ensure that the information they find is both personally relevant and accurate. Action at a distance

Telemedicine has been defined as ‘the use of electronic information and communications technologies to provide and support healthcare when distance separates the participants’.43 With improvements in IT in general, and with video links in particular, it will be increasingly possible to conduct clinical activities (consultations; review of clinical findings, and multidisciplinary team meetings) at a distance. Instead of a patient having to travel to a distant hospital for an expert opinion, it could simply be a matter of attending the local health centre and participating in a video-linked consultation with the hospital-based specialist.

75

The use of webcams and the internet would even extend this possibility to the patients’ own homes. A community nurse could conduct part of their daily rounds by a series of scheduled web meetings with those patients who might not need physical care, but for whom the opportunity to discuss problems and receive advice is a crucial part of their care. Care in the community

Hospital care is expensive. Not all sick patients with cancer need to be in hospital. Their needs may be equally, or perhaps better, met elsewhere. Care in the community represents a rare opportunity for financial pressures and societal pressures to act in the same direction: patients want to be as close to home as possible; specialist units want to accommodate only those patients for whom specialist care is necessary. However, if the hospital budget is completely independent of the budget for care in the community then the opportunity for logical process will be lost. If the number of patients cared for in the community is to increase, then additional funds will be required. Logic would dictate that these increased funds should come from the savings, in terms of efficiency, that the hospital is able to make through being able to discharge patients to the community. If the budgets are separate then funds will not move in the logical direction. The hospital’s savings will be used to fund new treatments and initiatives within the hospital, the community will be left trying to do more work on the same budget. The community services will be over-stretched and fail, patients in the community will drift back to hospitals that have already given away the resources that would previously have been used for the care of those patients: everyone will suffer. Care in the community is an attractive concept, but only if there is a sensible integrated approach to the allocation of resources.

Developments in the intellectual aspects of cancer care Thoughts about the origins of cancer

The classical view of the origins of cancer as a disease of cells can be traced back to Virchow in

76 Cancer, care, and society

the mid-19th century and his famous statement ‘I formulate the doctrine of pathological generation, and of neoplasia in the cellular pathological sense, in simple terms: omnis cellula a cellula’.44 In other words, cancer begins when a cell goes wrong and gives rise to a lineage of cells that are, in behavioural terms, cancerous. The development of molecular biology in the mid-20th century, and in particular the elucidation of the structure of DNA and the genetic code in the 1950s, led to the belief that cancer might be explained in biochemical terms. The DNA in the nucleus of the cell governs cellular behaviour, cancer cells misbehave, therefore there must be something wrong with their DNA. In simple terms, there are two types of misbehaviour: gain of an abnormal function, which occurs when the cell acquires a gene (‘oncogene’) that confers some malignant properties; and loss of a normal function, when the cell loses a gene (‘tumour suppressor gene’) that would normally protect it against malignant transformation. The key issue here is that it is the loss of control of proliferation that is fundamental to the development of cancer. Cancer cells do not necessarily divide more rapidly than normal cells. It is just that the normal cells know when to stop dividing, and the cancer cells do not. Recent research suggests that cancer may not arise from a single cell (‘clonogen’) that gives rise to the whole population of cancer cells. There may be multiple abnormal cells, arising at about the same time, all of which contribute to the development and growth of the tumour. This view emerges from a better appreciation that the origins of cancer lie in the interactions between cells and their environment. Very few cancers have purely genetic origins. Just as human development is the result of the interplay between nature and nurture, so cancer is a disease that represents the result of a changing environment acting upon more- or less-susceptible populations of cells. Damage to the genetic material of a cell is called a mutation. Mutation is therefore inextricably intertwined with the origins of cancer. Every time a cell divides it provides an opportunity for mutation to occur. Human beings continuously renew themselves, a process that requires cell division. We each make, and dispose of, about 100 litres of slurpy stuff (gut cells, blood cells, lung

cells, skin cells) each year. It takes about 2 500 000 000 000 000 cell divisions to produce a 50-year-old human being. In addition, our own bodies, as a result of our normal metabolic processes, expose us continuously to chemicals that cause mutations. Without even considering the effect of the environment (toxins, radiation), human beings generate 10 000 spontaneous mutations each day.45,46 Against this background, cancer appears to be surprisingly uncommon. The omic revolution

One current trend in cancer cell biology is to use the suffixes ‘ome’ and ‘omic’ to define areas of research activity. This is a manifestation of the ‘omic revolution’.47 Thus we have: genomics, the study of the total genetic material of a living entity; phenomics, the study of the complete set of phenotypes; proteomics, the study of the complete set of proteins in cells and fluids; the transcriptosome, that portion of the genome that is actively transcribed; metabolome, that portion of the transcribed genome that is metabolically active; ‘omic space’, a mathematical construct that defines the geometrical space within which all the other omics operate; and so on through epigenomics and ligandomics. The key issue here is not the coining of new words for old concepts but to emphasise that the omic approach involves looking at entities in their entirety. We are learning to appreciate, as Popea did centuries ago, that simply trying to pass complex systems into manageable entities is, ultimately, an impoverished approach to the riches of biology. We need to look at the system as a whole, not just at its components. Just as the holistic approach is increasingly important in clinical medicine, so the systems approach is increasingly dominant in biological research. We are now a long way from the search for the mythical genes that ‘cause’ cancer or schizophrenia. The modern question is: ‘what constellation of factors (genetic, epigenetic and environmental) combine in what ways to produce the particular biological phenomenon in which we are interested?’.

a

‘Like following life through creatures you dissect, You lose it in the moment you detect.’ Alexander Pope (1688–1744) Moral Essays. Epistle i. Line 20.

Developments in the management of cancer

Cell killing

The question ‘when is a cell dead?’ is deceptively complicated. The classical definition of a dead cancer cell is one that has lost its reproductive integrity, that is a cell which is incapable of division and is, in reproductive terms, doomed. The cell may appear morphologically normal; only when called upon to divide is its ‘death’ evident. Death by apoptosis or necrosis is a far less subtle process. The cell is dead in every sense of the word. In apoptosis the cell self-destructs in a programmed way, neatly breaking up into a set of packages that are disposed of in an orderly fashion. Necrosis is a more chaotic process. The cell is destroyed and there is a conspicuous inflammatory response with the unpackaged random fragments of cellular material being disposed of by phagocytosis. Symbiosis versus eradication

Twenty years ago the governing concept of cancer treatment was the need to destroy every last cancer cell. Cure was the aim and, on the supposition that it only took one malignant cell remaining for the tumour to recur, all the cells of the tumour had to be destroyed. Increasingly we are becoming aware of the limitations of this approach. First, it is difficult on theoretical grounds to work out how even an extremely effective cytotoxic treatment might eradicate every last malignant cell. Fixed doses of cytotoxic agents kill a constant proportion of cancer cells, not a constant number. Starting with a tumour containing 10 000 000 000 cells, the first course of treatment may kill 9 000 000 000 cells, the sixth course will kill only 9000 cells and there will still be 1000 cancer cells remaining. Impressive quantities of cell killing do not necessarily translate into tumour cure. The failure of high-dose therapies may be an illustration of the limitations of this view of ‘curative’ cancer treatment.48 Second, this view is based on the idea that a cancer starts at one time, and at one place, when a single cell acquires that set of abilities we define as malignant transformation. Everything that subsequently happens is the result of expansion of the original clone. This is by no means certain. Cells may undergo malignant transformations at different places and at different times. Cancer may be a multifocal disease, the

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concept of ‘field change’ has been around for a long time.49 Given what we are learning about normal stem cells, we cannot even assume that metastases arise only when cells physically travel from a primary tumour to a site of implantation and secondary growth. The presence of cancer within the body may change the internal environment so that uncommitted stem cells, in the marrow for example, transform into malignant cells with the morphological features of breast cancer, even though neither they, nor their ancestors, have ever been anywhere near the breast. We are now starting to draw finer distinctions: between cells that have some of the features of malignancy (such as ability to invade) but are not necessarily fully clonogenic, and those cells that, by themselves, are capable of reconstituting the tumour – tumour stem cells. It is possible that only a small proportion of malignant cells within a tumour have the quality of ‘stemness’. These are, when it comes to cure, the crucial cells. Eradicate them and the tumour never returns; fail to eradicate them and, eventually, the tumour will recur. The key issue then becomes time: if the tumour never has sufficient time to regrow within an individual’s natural lifespan then, in a pragmatic sense, this is tantamount to cure. This leads to a consideration of the concept of symbiosis, a set of circumstances in which the disease and its host co-exist peacefully (see Figure 5.3). Cancer cells are present, but they are not causing symptoms nor are they compromising survival. Realistically, this may have been what so-called ‘curative’ therapies have been achieving. Rather than maintain the fiction that cancer is, in the classical sense, curable, we should perhaps turn our thoughts as to how best to achieve a reasonable symbiosis. A human being contains 100 000 000 000 000 (1014) cells. A cancer 1 cm in diameter contains 1 000 000 000 (109) cells. By the time the number of cancer cells has been reduced to between 1 million (106) and 10 million (107), or thereabouts, the cancer is unlikely to produce symptoms or significant functional disturbance. This is a long way from ‘cure’. However, if, for the duration of a patient’s natural lifetime, we could keep the number of cancer cells below 10 million or so, we would have achieved, in the symbiotic sense, therapeutic success. Future

78 Cancer, care, and society Chemotherapy Suppression Death

Cell number ( x107)

1000 800 600

Symptoms

400

Detectable

200 0 0

100 200 Time (weeks)

300

Figure 5.3 The concept of suppressive as opposed to eradicative therapy – and why it might sometimes be the better therapeutic strategy. At a size of 200 × 107 the tumour is detectable (for example by a rise in a serum marker), at a size of 400 × 107 it is symptomatic, at a size of 1000 × 107 it is fatal. Chemotherapy produces rapid, but transitory, response and survival time is short. With suppressive therapy, the response is slower but of longer duration. Both overall survival time, and time without significant symptoms is prolonged by the suppressive approach.

therapeutic strategies, particularly those based on biological approaches, will combine cell killing with the suppression of tumour cells. We will give up our attempts to hunt down every last potential clonogen.

Developments in the personal and familial aspects of cancer management Individual beliefs and the flight from rationality

Clinicians involved in the care of patients with cancer are gradually learning to accept that patients’ own beliefs are important. We are moving from ‘complementary therapies have no scientific basis and you must not have them’ through ‘if you believe that a complementary therapy will help you, then it will probably do no harm and you might as well have it’ towards ‘how best might we incorporate complementary therapies into a man-

agement plan for this patient?’. In other words, we are moving from dismissal, through passive acceptance, and towards integration. We still face the fundamental dilemma: the clash of systems of belief. Clinicians are supposed to be scientific, and science is supposed to be rational. If there is no plausible mechanism whereby a treatment might exert its effect then that therapy is likely to be dismissed. But absence of evidence is not evidence of absence. Chinese herbs can alleviate both subjective and objective toxicity related to chemotherapy for colorectal cancer.50 The effect is there, we have no idea why it is there, but that does not mean that there is no biological mechanism for the effect: simply that we do not know what that mechanism is. If orthodox medicine could provide all the answers then there would be little need for complementary therapies. Orthodox practitioners sometimes appear to forget that, following an endless series of unfulfilled promises, there may be some public disillusion. Everyone has seen or read that week’s story about the latest breakthrough. Everyone is aware of the less newsworthy reality, they have watched relatives and friends die from the disease, despite the best efforts of orthodox practitioners. If we promised less, and delivered more, there would, perhaps, be less of a demand for alternative medicine. There are also other factors that may drive patients to seek alternative therapies. If we fail to explain ourselves properly, if we are arrogant and dismissive, if we pretend to have answers we do not have, then we can scarcely be surprised when our ‘rational’ advice is ignored. Users of complementary and alternative medicines (CAM) tend to be younger, better off and female. Older people are less likely to use CAM. Patients with cancer, perhaps surprisingly, seem no more likely than the general population to use CAM. It will be interesting to see whether, as they grow older, younger people bring their enthusiasm for CAM into their later years or whether, as they age, they lose interest and simply accept what orthodox therapy has to offer. If, as providers of health care, we are to acknowledge patients’ rights to make their own choices then we will need to learn how best to incorporate CAM into orthodox therapies. We should not be

Developments in the management of cancer

Social isolation and the decline of the family

The fabric of society is changing. Families are smaller and geographically more diffuse. The proportion of elderly people in the population is increasing. People are living longer after retirement. All of these factors will have effects upon patients with cancer and the support available to them. First, there is the simple financial question. As progressively fewer active workers have to support increasing numbers of retired people, will we have the financial resources to provide pensions and health care for the elderly? This is the tabloids’ ‘pensions time-bomb’. Then there are the questions about those things that are beyond price: if there are no children around, then who will provide emotional and practical support for elderly people with cancer? Things seem, at first consideration, grim. However, society shifts in a variety of ways and the rises in the rates of divorce and family breakdown may, in fact, enrich rather than impoverish the familial resources available to older people with cancer. Other trends, such as the move towards retirement communities, may also be helpful: older people giving each other that support that their families are unable to provide. However things turn out in the next few decades, we can be certain

that the social networks that support patients with cancer will be somewhat different from those that are currently in place. We will need to be able to adapt our management strategies to these changing social circumstances. Support during and after treatment

The concept of supportive care for patients with cancer is a surprisingly recent development. There is a vast amount of information on supportive care for patients with cancer: 1.73 million hits on Google for ‘supportive care’ and cancer; 91 books on supportive care and cancer available online through Amazon (27 April 2006). Since the first publication in 1964,52 there has been an exponential increase in the number of publications retrieved from Medline using the search criterion ‘supportive care AND cancer’ (see Figure 5.4). Many of these developments in the supportive care of patients with cancer are outlined elsewhere in this volume and in specific textbooks.53,54 The importance of supportive care in cancer will continue to increase. As patients become more knowledgeable they will, quite rightly, demand more support. As cancer treatment becomes more complex, particularly with the integration of new therapies into the traditional triad of surgery, drugs and radiation, then the need to provide relief for treatment-related symptoms will increase. We already know that combining chemotherapy Number of publications per decade

forcing CAM upon reluctant or sceptical patients, but nor should we be denying it to those patients who believe it will help them. Leaving aside the vexed questions of evidence and belief, as clinicians we need to know three main things about any complementary or alternative therapy: is the complementary treatment toxic in its own right; is there any interaction between the complementary therapy and the conventional therapy that might increase the toxicity of either; is there any interaction between the complementary therapy and conventional therapy that might affect the efficacy of either? The evidence so far available suggests that acupuncture, aromatherapy, reflexology and spiritual healing are unlikely to cause direct harm.51 Coffee enemas, some herbal medicinal products, osteopathy, and ozone therapy may occasionally cause serious complications and should not be used without careful consideration.

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1200 1000 800 600 400 200 0 1960– 1969

1970– 1979

1980– 1989

1990– 1999

2000 onwards

Decade

Figure 5.4 Publications identified by criterion ‘supportive care AND cancer’: Medline, by decade 1964 to 2006.

80 Cancer, care, and society

and radiation increases both tumour control and acute toxicity. As additional agents, such as inhibitors of signal transduction, are added in order further to improve tumour control, it is almost inevitable that patients will experience yet greater toxicity. We will need to derive regimens to mitigate these toxicities and enable patients to reap the benefits of these new approaches to treatment. A patient’s experience of cancer does not end when active treatment finishes. When treatment has been unsuccessful then they will need palliative care and support and, as mentioned previously, it is vital that this change may not be, from the patient’s point of view, too abrupt. Even when treatment is successful, patients need support. There is good evidence that patients are psychologically at their most vulnerable at the end of a course of curative treatment.55–59 Anxieties increase just at the time hospital visits become less frequent. This can be regarded as a withdrawal of support and interest and, again, is a transition that needs to be handled carefully. The concept of ‘survivorship’ explicitly acknowledges that patients who have been successfully treated for cancer have been through an experience that has changed their lives.60,61 They, and their families, may have specific needs: for information, advice, and both physical and psychological support.62–66 The problems don’t end when treatment finishes. Increasing interest in the needs of cancer ‘survivors’ is evidenced by the growing number of publications addressing the support needs of people with cancer (see Figure 5.4).

THE PRACTICE OF ONCOLOGY Developments in prevention Changes in human behaviour

Worldwide, mortality rates for cancer are not falling as fast as they are for cardiovascular disease.67 The impact of new treatments for cancer has, overall, been relatively modest with annual decreases in adjusted death rates of 1.5% for men and less than 1% for women in the developed world. Against this background, and considering the logistic and economic barriers to the delivery

of effective cancer therapy to the citizens of the developing world, it is clear that the most effective way to decrease the global burden of cancer would be through interventions that decrease the risks of the disease developing in the first place. Doll and Peto estimated that, in the US, over 80% of cancers were determined by environment or behaviour.68 The Comparative Risk Assessment Collaborating Group (Cancer) identified nine risk factors for cancer that were related to environment or behaviour (see Box 5.2) and calculated their effects on the global burden of cancer.69 They estimate that 37% of the 7 million deaths from cancer each year are caused by potentially remediable conditions: nearly 2.5 million people die each year from cancers that could have been prevented.70 Box 5.2 Nine main causes of preventable cancer worldwide • • • • • • • • •

Obesity – high body mass index Inadequate intake of fruit and vegetables Lack of physical exercise Smoking Excessive alcohol intake Unprotected sex with infected partner Environmental particulate pollution Household use of solid fuel Contaminated injections (hepatitis B and C).

Genetics applied to cancer prevention

Most cancers arise as a result of the interplay between genetic and environmental factors. We can do little about the genes we inherit but we can use our knowledge of an individual’s genetic background to minimise their risk of developing cancer. There are several well-defined syndromes associated with an inherited susceptibility to cancer and these, together with possible means for lowering the associated risks of cancer, are outlined in Table 5.1. Dominant inheritance implies that, on average, 50% of the offspring of an affected individual will inherit the increased susceptibility to cancer – it is the susceptibility that is inherited, not the cancer. Recessive inheritance implies that two-thirds of the normal siblings of an affected individual would be expected to be carriers of the condition: all

Developments in the management of cancer

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Table 5.1 Summary of the main dominantly inherited syndromes associated with increased susceptibility to cancer Syndrome

Gene(s) implicated

Familial adenomatous APC polyposis (FAP)/ Gardner syndrome

Hereditary nonpolyposis colorectal cancer (HNPCC) HNPCC1 HNPCC2 HNPCC3 Peutz–Jeghers syndrome Multiple endocrine neoplasia (MEN) MEN type 1

DNA mismatch repair genes (MLH1; MSH2; MSH6) MSH2 MLH1

PMS1 STK11

Associated tumours and abnormalities

Strategies for prevention/ early diagnosis

Colorectal cancer under the age of 25 years; papillary carcinoma of the thyroid; cancer of the ampulla of Vater; hepatoblastomas; primary brain tumours (Turcot syndrome); osteomas of the jaw; congenital hypertrophy of the retinal pigment epithelium (CHRPE) Colorectal cancer (typically in 40s and 50s)

Prophylactic panproctocolectomy

Non-steroidal anti-inflammatory drugs; surveillance colonoscopy

Endometrium, stomach, hepatobiliary (Lynch syndrome 1) Bowel cancer; breast cancer; freckles round the mouth

Surveillance colonoscopy; mammography

Menin

Parathyroid tumours; islet cell tumours; pituitary tumours

MEN type 2A

RET

Medullary carcinoma of the thyroid; phaeochromocytoma; parathyroid tumours

MEN type 2B

RET

Li-Fraumeni

P53

Medullary carcinoma of the thyroid; phaeochromocytoma; mucosal neuromas; ganglioneuromas of the gut Sarcomas; leukaemia; osteosarcomas; brain tumours; adrenocortical carcinomas

Familial breast cancer

BRCA1; BRCA2

Breast cancer; ovarian cancer; papillary serous carcinoma of the peritoneum; prostate cancer

Familial cutaneous malignant melanoma Basal cell naevus syndrome

CDNK2A; CDK4

Cutaneous malignant melanoma

Awareness of associations and paying attention to relevant symptoms Regular screening of blood pressure, serum calcitonin and urinary catecholamines; prophylactic thyroidectomy Regular screening of blood pressure, serum calcitonin and urinary catecholamines; prophylactic thyroidectomy; Very difficult, since pattern of tumours is so heterogeneous and varies from patient to patient Screening mammography; pelvic ultrasound; PSA (in males); prophylactic mastectomy; prophylactic oophorectomy Avoid exposure to sunlight, careful surveillance

PTCH

Basal cell carcinomas; medulloblastoma; bifid ribs

Careful surveillance, awareness of diagnosis (look for bifid ribs on X-ray)

82 Cancer, care, and society Table 5.1 Continued Syndrome

Gene(s) implicated

Associated tumours and abnormalities

Strategies for prevention/ early diagnosis

Von Hippel–Lindau

VHL

Renal cancer; phaeochromocytoma; haemangiomas of the cerebellum and retina

Urinary catecholamines

Neurofibromatosis Type 1

NF1

Type 2

NF2

Astrocytomas; primitive neuroectodermal tumours; optic gliomas; multiple neurofibromas Acoustic neuromas; spinal tumours; meningiomas; multiple neurofibromas

the offspring of an affected individual will be carriers. There are also several recessively inherited syndromes associated with inherited susceptibility to cancer. These include ataxiatelangiectasia, Bloom’s syndrome and xeroderma pigmentosum. The whole area of genetic prediction and prevention is fraught with moral and ethical difficulties.70,71 How much do we want to know, what can we do to change our destiny, should we allow ourselves to have children, how much should we be told, when should we be told, who should do the telling? How do you discuss prophylactic mastectomy and oophorectomy with a young woman who is hoping to get married and have children? There is no guarantee that she will get breast cancer, just because she has a BRCA mutation. But she has already watched an aunt and a sister die from the disease. The use of SNPs (single nucleotide polymorphisms) is about to make the whole business even more complicated. A SNP arises when one base in a DNA molecule is, with reasonable frequency, replaced by another. SNPs occur throughout the human genome, at a rate of one per several hundred bases, and can be thought of as identifiable markers along the length of the DNA. It has recently become possible to analyse many different SNPs rapidly and simultaneously,72 and to associate the pattern of the SNPs with clinical outcomes and cancer risk.73 Data on SNPs is widely available in public-access databases. The ease of this technology is both attractive and

A difficult problem; maintain a high index of suspicion concerning any rapid changes in growth or character of any nodule

terrifying. Attractive, because it gives us a means of rapidly identifying associations between inheritance and disease; terrifying because it points to a future in which our individual SNP pattern might be used to dictate what we are allowed to do with our lives. If my SNP pattern identifies me as vulnerable to radiation-induced cellular damage then I should not be allowed to work in a nuclear power station. Conversely, if your SNP pattern indicates that you can easily metabolise the carcinogens present in tobacco then we might tell you that it is safe for you to smoke cigarettes. Cancer vaccines

Vaccines have two potential roles in the management of cancer: prevention and treatment. The use of vaccines in the treatment of cancer is considered later on in this chapter. Vaccines in cancer prevention

The main role of vaccines in modern medicine is in the prevention of infectious disease. Those cancers that are related to infection are therefore the main candidates for prevention using vaccines. Unfortunately, very few cancers are linked, either directly or indirectly, to infection. HIV infection is related to an increased incidence of malignancy (Kaposi’s sarcoma; lymphomas; anal cancer; germ cell tumours; squamous carcinoma of the conjunctiva; cervical cancer) but there is, as yet, no effective vaccine against HIV. The development of effective anti-retroviral therapy has, however, lowered the incidence of malignant disease in

Developments in the management of cancer

patients who are HIV positive.74,75 The problem of HIV-related malignancy is a major threat to the developing world. Given the unaffordability of anti-retroviral drugs in the developing world, a vaccine-based strategy is our best long-term prospect for dealing with the threat. Cancer of the cervix is a tumour that is related to viral infection. The main culprit is the human papilloma virus (HPV) types 16, 18, 6, and 11. Effective vaccines against HPV are now available,76 and offer the prospect of successfully controlling cervical cancer. The combination of vaccination and screening could, in theory at least, eradicate the disease. Over 95% of cases of squamous cancer of the cervix are associated with HPV infection. The infection is usually acquired through sexual intercourse: if the infection could be prevented, then so could the cancer. The main approach to preventing HPV infection has been through vaccination. Two main commercial vaccines are currently being tested in large-scale clinical trials: a vaccine against HPV types 16 and 18;76 a vaccine against HPV types 6, 11, 16 and 18.77 Both have achieved proof of principle: there is evidence that vaccination prevents infection. The next stage of proof will be to show that preventing HIV infection prevents cancer of the cervix; the final proof will be to show that vaccination lowers mortality from cervical cancer in an immunised population. In order to have their maximum effect these vaccines have to be given before first exposure to HPV, that is before a girl’s first sexual intercourse. This poses ethical dilemmas. Some girls commence intercourse very young (at age 10 or 11 years), others do not. A population-based approach would, nevertheless, involve vaccinating all girls before their teenage years. This raises issues of informed consent – whose consent matters here, the child’s or the parents’? Some have suggested that proof of HPV vaccination should be made a requirement for entry into secondary school. This may make sense from a public health perspective, but has an unpleasant element of coercion.78 Primary liver cancer is a major problem in the developing world. Although rare in the developed world, hepatocellular cancer is the fifth most common tumour worldwide. There is a clear association between infection with the hepatitis viruses

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B and C and primary liver cancer. The incidence of hepatocellular carcinoma in hepatitis B-positive patients with cirrhosis is 12%, the relative risk in carriers of hepatitis B compared with non-carriers is over 200.79 Immunisation against hepatitis B is an effective method for controlling hepatocellular cancer related to infection with that virus.80 Hepatitis C infection, by causing chronic liver disease, may also be associated with an increased risk of hepatocellular cancer. The recent rise in the incidence of primary liver cancers observed both in the West and in Japan may be related to increasing rates of infection with hepatitis C. There is, as yet, no vaccine against the hepatitis C virus and, consequently, hepatitis C may become an increasingly important cause of primary liver cancer throughout the world.81

Developments in diagnosis and staging Molecular diagnosis

The diagnosis of cancer has traditionally depended upon a pathologist viewing a malignant cell under a microscope. This approach is, inevitably, invasive. To see the cell requires tissue, and to obtain tissue a biopsy is needed. As we move into an era of ‘omic medicine’ the potential exists for making the diagnosis of cancer by looking for molecular signatures in the components of peripheral blood. In proteomics we would look at the characteristic pattern of proteins associated with malignancy. We can also attempt to identify circulating malignant cells. In leukaemia this is an obvious and well-tested technology but the approach may now be extended to solid tumours. The technique of polymerase chain reaction (PCR), and elaborations thereupon, can be used to amplify small amounts of genetic material. Using this technology, it is possible to obtain detailed genetic information from the small number of tumour cells that can be found in the peripheral blood of patients with cancer. Current techniques are too unreliable for routine use but, as we develop this approach, it is possible to envisage non-invasive approaches to cancer that will yield useful diagnostic and prognostic information.81–83 Cells other than tumour cells may also be important in this

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context: circulating endothelial cells may originate from the abnormal blood vessels formed by a growing tumours, and their detection may point to the presence of malignancy.84 Personalised medicine

It is hard to imagine clinical medicine as being ever, at any time, anything other than personalised. ‘Personalised medicine’ involves the use of genomic technologies to predict individuals’ responses, in terms of both benefits and harms, to specific drugs.85 By knowing what to expect, we will be able to put therapy for each individual on a rational basis. We would avoid giving drugs that, at the level of the individual person, would either not work or be so toxic as to negate any potential benefit. It is no coincidence that one of the earliest uses of the term ‘personalised medicine’ was in the Wall Street Journal.86 There is money to made in this approach: if you can charge both for the predictive test, and for the drug treatment based on the results of that test, then, compared with simply charging for the drug, you have doubled your opportunity for profit. The idea that specific genetic sequences, which act as markers for particular susceptibilities, might be patented for use in commercial tests is somewhat against the spirit of science as co-operative enterprise. It may also hamper attempts to improve health care in the developing world.87,88 It will be interesting to see whether the 21st century concept of ‘personalised medicine’ is able to deliver as much as it currently seems to promise. Imaging

Developments in diagnostic imaging have had an enormous impact on the management of cancer over the past 25 years. Cross-sectional imaging with CT scanning and MRI have enabled us to map out the extent of disease in ways that could only have been dreamt of in the 1950s. We can determine whether clinically occult metastases have occurred (to lungs, to liver), and we can link the data from imaging the primary tumour directly to the equipment used for planning treatment with radiotherapy. One lesson we have learnt already: new imaging techniques are more likely to supplement, than to supplant, older techniques. MRI has not replaced CT scanning in staging

patients with cancer. There has also been considerable technological development within each of the classic imaging modalities (CT, MRI, ultrasound, nuclear medicine). A CT scan performed in 2006 is very different from one performed in 1995. The resolution of detail is greater, the scan takes far less time to perform, and the radiation dose to the patient is higher. The greater resolution is not always an advantage. It is likely to raise the incidence of false-positive scans and increase uncertainty for clinicians and anxiety for patients. What is the significance of a 5 mm opacity in the lung of a patient who had an operation for a nodenegative cancer of the colon 4 years ago? How do you prove it is not a small metastasis? Could it be an innocent granuloma related to the patients’ previous occupation as a worker in a jute mill? What should you tell the patient? Similarly, ultrasound has moved a long way from the fuzzy fetal images of the 1970s: we now have colour Doppler (to show blood flow, or lack of it) and various endoluminal techniques that allow imaging from within hollow organs such as the oesophagus, rectum, ureter or aorta. Intraoperative ultrasound allows the surgeon to assess the state of the liver during surgery and can be very useful in discriminating between benign cysts and metastases within the substance of the liver. Open-coil MRI enables surgeon and radiologists to perform biopsies using magnetic resonance images, just as fluoroscopy, CT and ultrasound facilitate image-guided biopsy. Optical coherence tomography (OCT) is a recently developed technique that may allow us to look at histology without the need for a biopsy. Using an OCT probe introduced with an endoscope it is possible to take high-resolution images of the oesophageal wall and, by visualising the architectural arrangement of the cells in the oesophageal wall, discriminate benign dysplasia from early cancer.89 Functional imaging Traditional imaging procedures (CT, MRI, ultrasound) tell us a lot about anatomy, but very little about function. Positron emission tomography (PET) scanning offers the ability to image both structure and function simultaneously. PET scanning can be used to image metabolism in tumours

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(using 14-fluorodeoxyglucose, FDG); oxygen uptake in tumours and normal tissues (using 15O2), and it can also, using drugs labelled with isotopes, show drug distribution and metabolism. PET images are, compared to high-resolution CT images, fuzzy. This has led to the development of PET-CT techniques in which images taken by the two different techniques are registered with each other and fused.90 This, in theory, gives us the spatial resolution of CT and the functional information of PET. On of the main uses of this approach in oncology has been in the investigation of mediastinal nodes in patients with lung cancer for whom surgery is being considered. PET-CT can be used to discriminate enlarged, but normal, nodes from nodes that are enlarged because they contain metastases.91 Interventional radiology Interventional radiologists provide a repertoire of minimally invasive techniques that are extremely useful in the management of patients with cancer. Image-guided biopsies or cytological aspirates can enable the initial diagnosis, or that of recurrent disease, to be made without the need for major surgery. Examples would include percutaneous fine-needle aspirates of peripheral lung nodules, and ultrasound-guided biopsy of liver lesions in patients suspected of having colorectal cancer. A stent is a rigid tube that can be used to relieve obstruction. Obstructing cancers of the gullet can be treated palliatively by self-expanding metal stents introduced via endoscope or by being passed over a guide wire.92,93 A similar approach can be used for the relief of superior vena caval obstruction,94 biliary obstruction,95 and bronchial obstruction.96 Plastic stents can be inserted from above or below into the ureter as a means of rapidly dealing with renal failure caused by obstruction of the renal tracts. Trans-catheter embolisation is an interventional technique that directly targets the tumour vasculature. A catheter is introduced into vessels feeding the tumour and then material (alcohol, sponge, metal coils) that provokes clotting is squirted into the tumour. In effect, this produces infarction of the tumour. The approach can be used for palliative or pre-operative treatment for renal cancer,97 or, combined with local infusion

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of chemotherapy, for liver tumours.98 Direct interference with the blood supply to a tumour is not a new concept. Shortly after his original description of the circulation of the blood (in 1639), William Harvey, in an attempt to treat a testicular tumour, ligated the testicular artery of a patient.99

Developments in cancer treatment New targets and new approaches

As our knowledge of the basic mechanisms involved in malignant transformation has grown, then so has the sophistication of our attempts to manage the disease. Twenty-five years ago most cancer treatments were aimed at selectively killing cells that were actively dividing. The prime therapeutic target was DNA; if we could damage the DNA of replicating cells then we would prevent them dividing and, so the theory went, eradicate every last tumour cell. As mentioned previously, this picture is both incomplete and imperfect. It is the lack of control over cell division, rather than its rate, that is the key feature of the malignant process. Our attempts have therefore moved from a philosophy of ‘let’s kill them all’ towards a more reasoned approach: ‘what has made this particular group of cells misbehave, at this particular place and this particular time, and how might we best encourage them to revert to a more normal type of behaviour?’. In the current jargon, we start with ‘target identification’, finding out which gene (or gene product) has gone wrong. We then try to identify or design a drug that will restore normal function (‘lead identification’). Once we have a potential therapeutic compound then we can look at close chemical relatives or directly tweak its molecular structure in order to identify that chemical that best restores normal activity (‘lead optimisation’). Having found the best candidate we would then move into preclinical testing and then into clinical trials. This process is both very expensive and extremely time consuming. The clinical phase of development alone takes on average more than 6 years, and the whole process of bringing a drug to market may cost as much as $800 million.100 Only a small proportion of candidate compounds ever make it to market and, as

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a result, those that do are very expensive indeed. Various measures are being introduced to try and speed up the process. The regulatory authorities, learning from the experience gained with HIVAIDS, are providing fast-track procedures so that effective new treatments are not subjected to excessive bureaucratic delay. The drug companies themselves are also appreciating that contracting out the clinical testing, particularly to countries outwith Western Europe and the US, will improve accrual rates to trials: faster results at lower costs.101 This all has implications for the future of academic oncology: testing drugs on behalf of companies has, up until now, been a fairly lucrative option for universities in the UK and US. Now that contract organisations are undercutting prices and producing more rapid results, this source of revenue is likely to diminish. The extent to which the cancer research agenda has been set by com-

mercial interests is, in any event, a matter of some concern.102 The story of the development and marketing of the drug imatinib, used for the treatment of chronic myeloid leukaemia (CML) and gastrointestinal stromal tumours (GIST) provides a useful illustration of the concepts and practicalities involved. Signal transduction is that series of processes whereby events outwith a cell can influence events within the cell. A message from outside the cell is transmitted to the nucleus and, as a consequence, influences the behaviour of that cell (see Figure 5.5). A crude mechanical description of the initial step in this process, involving the receptor tyrosine kinase, would go as follows. A messenger molecule (ligand) outwith the cell binds to the part of the tyrosine kinase that sticks out onto the

Ligand

EXTERNAL ENVIRONMENT

Receptor CELL MEMBRANE Receptor tyrosine kinase

Protein kinases Docking proteins, other enzymes and metabolites

INTERNAL ENVIRONMENT

Nucleus

Figure 5.5 A schematic diagram of signal transduction. This is the process whereby information from outwith the cell influences events at the nucleus. Signal transduction pathways offer normal cells the ability to respond flexibly to changing external circumstances. In some cancer cells, signal transduction pathways are active, independently of outside events: it is as if a switch jammed in the ‘on’ postion. A molecule (ligand) binds to the receptor on the cell’s surface. This triggers a cascade of messages, mediated by a series of enzymatic reactions, that eventually reach the nucleus. The enzymes, such as receptor tyrosine kinase and the protein kinases, involved in the transmission of these messages are potential targets for new anti-cancer drugs.

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surface of the cell. This stimulates the tyrosine kinase to join to another tyrosine kinase molecule (‘dimerisation’), as a result of which a phosphate molecule binds to the twinned molecules (‘autophosphorylation’). The presence of this phosphate molecule causes the part of the tyrosine kinase molecule that is within the cell to become an active enzyme, which is able to transfer a phosphate molecule from the energy donor ATP to a target protein (‘kinase activity’). The target protein gains energy and then is able, in turn, to use this energy to influence other events within the cell (‘downstream signalling’). A vital feature of this process is that the activated tyrosine kinase forms a pocket within which the ATP can locate, and it is this physical act of location that allows the ATP to transfer energy to the target protein. Once the energy is transferred, the ATP changes shape and drifts out of the pocket, leaving it free for another ATP molecule and another transfer of energy. If the pocket is occupied by a molecule that fits it, just as ATP does, but does not give up energy and does not change shape, then the pocket is permanently occupied by an inert agent. Energy is not transferred, there is no signal, no matter what happens to the receptor on the cell surface, and no information will be passed on towards the nucleus. The development of imatinib as an effective treatment for CML and GIST has been used to exemplify how we might develop targeted therapies.103 The problem is that, like many so-called examples, it may represent an experience that is untypical. In CML and GIST, the majority of patients have abnormalities affecting the tyrosine kinase that is imatinib’s target. However, for example in lung cancer, only about 10% of patients have mutations in the EGFR-related tyrosine kinase that is the target for the specific inhibitor gefitinib. When gefitinib was introduced as a new agent for treating lung cancer the assumption was that it would inhibit EGFR-related tyrosine kinase in all patients: it did not. Objective response rates were less than 20%.104–106 EGFR expression did not predict response, but mutations in the EGFR-related tyrosine kinase did. These mutations had straightforward clinical correlates: responses were more likely in females, in patients with adenocarcinoma, in Japanese

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patients, and in non-smokers.107 So, as we consider the future of targeted therapies, we are left with the question which is the more reliable guide: imatinib or gefitinib; success for almost all patients or effective therapy for a small, but potentially identifiable, minority? Figures 5.6 and 5.7 illustrate the variability of response of gastrointestinal (GIST) tumours to imatinib. Figure 5.6 shows success; Figure 5.7 shows failure. Gene therapy for cancer

If cancer is a disease of genes, then therapy aimed directly at correcting the genetic abnormality would appear to be an entirely logical therapeutic strategy. The logic may be impeccable but the clinical results have been largely disappointing. The promise that was offered when the first cancer-specific genes were identified has not been fulfilled. There are a number of reasons for this. The main obstacles to the clinical success of gene therapy are: delivery of the therapeutic gene to the target; persuading the target cells to incorporate the novel gene construct; and ensuring that the incorporated construct is safe and effective. Viruses provide an obvious means of transporting and inserting genes into the host genome, this is, after all, what they normally do. Unfortunately the use of live viruses is hazardous and there have been unexpected deaths in studies of gene therapy in humans.108 As a result of this, and also because of concerns about rogue genes running amok in the human gene pool, there are now strict regulations governing this type of research. This imposes a further barrier to the rapid deployment of gene therapy for cancer. It is unlikely that the technical problems associated with gene therapy will be solved rapidly, and most of the techniques currently under trial may be too cumbersome for routine clinical use. RNA interference is a promising tool for gene therapy: it involves the use of small peptides to silence abnormal genes. The problem is, as ever, finding suitable vectors to convey the silencing peptides to the therapeutic target.109 Given the slow rate of progress so far, and the regulatory framework within which any advances must be made, it is unlikely that gene therapy will, within the next decade, have any major impact upon the management of cancer.

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August 2004

February 2005

+ + 6.8 cm

+ + 3.8 cm

Figure 5.6 Gastrointestinal stromal tumours (GIST) of the rectum image on the left, pre-treatment showing extensive displacement of the bladder by a 6.8-cm-diameter tumour. On the right, after 6 months treatment with imatinib mesylate, the tumour has shrunk to a diameter of 3.8 cm. The patient remains well following surgical resection of the tumour in March 2005.

May 2005

December 2005

Figure 5.7 Primary resistance to imatinib mesylate in a patient with gastrointestinal stromal tumour (GIST) metastatic to the liver. There is clear progression of the liver lesion, despite treatment with imatinib mesylate, between May and December 2005.

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Cumulative number of drugs

70 60 50 40 Cytotoxics 30 20 Hormones

10 0 1940

Targeted 1950

1960

1970

1980

1990

2000

2010

Year

Figure 5.8 Data obtained from the Federal Drug Agency of the US on new approvals for cancer drugs 1949– 2006. The plots are cumulative and show a rate at which new drugs are approved for treating cancer. The black line shows the curve for classically cytotoxic drugs; the dashed line shows the curve for hormonal therapies; the dotted line shows the curve for targeted therapies (drugs aimed at signal transduction pathways). There is no sense that targeted therapies are being approved at a faster rate than classically cytotoxic agents.

New drugs for old targets

Although the modern approach to target identification and the development of new therapeutic agents offers considerable promise we will, for the foreseeable future, still rely on cell killing as at least a part of our approach to treating cancer. We will still be trying to damage DNA, even though we increasingly appreciate that, by so doing we may be causing long-term harm. It is one of the great ironies of cancer treatment with either radiation or classically cytotoxic drugs that we can, with our therapies, cause the very disease that we are trying to cure. Secondary, treatment-induced, malignancies are becoming an increasingly important cause of death in those who have been successfully treated for cancer: 16% of all new cases of cancer in the US occur in that 3.5% of the population who are long-term survivors after being treated for cancer.110 Although little can be done about the genetic damage caused by agents designed to damage genetic material, it is possible to devise drugs that have less overall toxicity. Carboplatin is a derivative of cis-platinum that causes less damage to the kidneys than the parent compound (but does cause more damage to the bone marrow, particularly megakaryocytes). The idea of designing less

toxic versions of active compounds is not a new one: cyclophosphamide is really just a less poisonous way of giving mustine. Despite the move towards targeted therapies for cancer, there has been no recent decrease in the rate at which new, classically cytotoxic, drugs have come on to the market. Over the last decade, the rate of new Food and Drug Administration (FDA) approvals for drugs used in treating cancer has been the same for both types of drug (see Figure 5.8). The newly introduced, classically cytotoxic, drugs include: oxaliplatin – a cis-platinum derivative with activity against colorectal cancer; pemetrexed – an anti-folate with activity against mesothelioma; and clofarabine – a purine nucleoside analogue used in the treatment of leukaemia. Old drugs in new clothes

The side-effects of drugs used in the treatment of cancer may sometimes depend upon the way the drug is formulated. Liposomes are small globules of lipid that can be used to encapsulate drugs. The liposomal preparations may be less toxic than the naked drug and the properties of the liposome itself may improve delivery of the active drug to the tumour. Liposomal preparations used in

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oncology include liposomal doxorubicin (Doxil), which is used in the treatment of ovarian cancer and HIV-related Kaposi’s sarcoma. The liposome may be preferentially trapped within the abnormal vasculature of tumours and thus deliver high concentrations of the doxorubicin directly to the tumour. The main advantage is, however, that liposomal doxorubicin is far less toxic than doxorubicin itself. Hair loss is much less frequent, and lower cardiac toxicity means that the total cumulative dose of liposomal doxorubicin can be higher than the 500 mg/m2 cap that limits the use of doxorubicin over the longer term. Other liposomal drugs used in oncology include: liposomal amphotericin, for the treatment of severe fungal infections; and liposomal daunorubicin for HIVrelated Kaposi’s sarcoma. Polyethylene glycol (PEG) can also be used to modify the distribution and behaviour of drugs used in the treatment of cancer. This process, ‘PEGylation’ can prolong the duration of biological action of the drug, and has been useful in producing sustained-release preparations. Many drugs that are of potential use in the treatment of cancer are poorly soluble in water. Since human beings are 50–60% water, this is a major limitation. Paclitaxel is particularly insoluble in water and so the standard preparation for intravenous use has had comparatively large quantities of ethanol and Cremophor EL (polyethoxylated castor oil) added to it as a vehicle to maintain solubility. Cremophor EL can cause allergic-type reactions and many of the hypersensitivity reactions associated with paclitaxel arise, not because of the drug itself, but because of the additional chemicals required to ensure solubility and stability. A variety of approaches have been taken to deal with this problem: filtration techniques; emulsions; liposomes. Only one approach has, so far, been approved by the FDA. This involves the use of nanoparticles bound to albumin (ABI-007, Abraxane). Preliminary testing suggests that this formulation of paclitaxel may be both safer and more effective. Another development is to find ways of making cancer treatment more convenient. 5-fluorouracil (5-FU) has been used in cancer treatment for more than 30 years but it is somewhat cumbersome to administer effectively. It has a 10-minute

half-life after intravenous injection and, when given by mouth, is not reliably absorbed. Giving folinic acid may prolong the effective period of action of 5-FU; giving the drug by continuous intravenous infusion is an obvious, but unwieldy, way to deal with its pharmacological limitations. The pro-drug capecitabine offers a convenient means of giving 5-FU orally and effectively mimics the pharmacology of continuously infused 5-FU. Capecitabine is first converted to 5′-DFCR by liver carboxylesterase the 5′-DFCR is converted to 5′-DFUR in the liver and tumour, and the 5′DFUR is then converted to 5-FU by the enzyme thymidine phosphorylase which is preferentially expressed in tumour tissues.111 Vaccine therapy (immunotherapy) for cancer

Tumours are derived from our own normal cells and, unlike a kidney transplanted from a stranger, do not stimulate a strong immune response. Nevertheless there are identifiable, but subtle, differences between the antigens expressed by tumours and those expressed by the host tissues. These differences form the basis of the concept of ‘tumour-associated antigens’: antigens that uniquely identify malignant cells. The hunt for, and attacks based upon, these antigens is the basis for the immunotherapy of cancer. Despite an attractive rationale, the clinical results have failed to meet expectations. There are several reasons for this: the antigenic differences between tumours and normal tissues are slight and, therefore, selective targeting is difficult; even when immune responses are evoked, they tend to be weak and have little impact upon clinical outcome; the immune system is far more subtle and complex than was originally appreciated – we enter the territory of unforeseen consequences.

Developments in decreasing the toxicity of treatment Many cancers are now curable, but the costs, in terms of side-effects related to treatment, may be considerable. There are several ways in which toxicity can be mitigated without compromising cure. One is to develop new therapies that

Developments in the management of cancer

maintain effectiveness but with fewer adverse effects; examples include carboplatin (rather than cis-platinum); conformal radiotherapy (rather than treating with open fields).112 The use of molecular profiling and pharmacogenomics may enable clinicians to identify individuals at particular risk of developing treatment complications after specific treatments. We would then be able either to avoid using the treatment in those particular patients or, if there were no effective alternative, to use modified doses and schedules. Examples of this approach already exist. Patients with Gilbert’s syndrome (unconjugated hyperbilirubinaemia) are at particular risk of irinotecaninduced diarrhoea, and should not be treated with standard doses of the drug.113 In some circumstances we may have to accept that the treatment itself is bound to have adverse consequences and then to devise specific interventions that lessen the impact of treatment-related toxicity. Colony-stimulating factors (CSFs) can be used to lessen the myelosuppressive effects of chemotherapy. CSFs are involved in the control of normal haemopoiesis, they stimulate stem cells to divide and differentiate into mature functional cells. Filgrastim, pegfilgrastim, and sargramostim may all be used to prevent neutropenia (and, by extension, the risk of serious infection) in patients undergoing chemotherapy; epoietin and darbepoietin may be used to decrease the severity of anaemia, and have been advocated as alternatives to transfusion as a means of dealing with anaemia and fatigue arising from cancer and its treatment. Somewhat surprisingly, there is some evidence that decoctions of Chinese medicinal herbs may reduce the incidence of both neutropenia and of nausea in patients being treated with chemotherapy for colorectal cancer.50 Amifostine has been widely promoted as a clinically useful radioprotector, that is as a drug that may selectively protect normal tissues against the adverse effects of radiation. Despite decades of use, we still really do not know whether or not it has a role in clinical practice.114,115 It may offer some protection against dry mouth in patients treated with radiotherapy for head and neck cancer and a recent meta-analysis suggests that it also protects against mucositis, radiation pneumonitis, and diarrhoea. This review also finds no evidence

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that amifostine protects tumours.116 A detailed review of the evidence in 2002 concluded that the only clear indication for amifostine was in the prevention of radiation-induced xerostomia.117 Publication bias and commercial sponsorship are major threats to the integrity of the literature on this topic: the literature search for the metaanalysis identified 33 potentially eligible trials, 10 of which had to be excluded on the grounds that they were duplicate publications.116 Anti-emetics are important in preventing and treating nausea and vomiting related to treatment for cancer. The vomiting associated with chemotherapy has three main phases: anticipatory, associated with apprehension and anxiety before any chemotherapy is actually given; acute, occurring within 48 hours of treatment; delayed, occurring several days after treatment. The development, during the 1980s, of the selective antagonists of the 5-hydroxytryptamine (5-HT3) receptor was a major advance. Drugs such as ondansetron, granisetron and tropisetron have had a major impact upon our ability to deliver acceptable treatment, particularly with highly emetogenic drugs such as cis-platinum. Palonosetron is a recently developed 5-HT3 receptor antagonist that has both high binding affinity and long plasma half-life. It may, therefore, have some therapeutic advantages over existing drugs. The results from two recent metaanalyses confirm that the combination of 5-HT3 antagonist and dexamethasone is more effective than either alone, and that the addition of dexamethasone to a 5-HT3 antagonist does not increase the incidence of adverse events.118,119 The neurokinin (NK) receptors are also important potential targets for anti-emetic drugs. Substance P is a tachykinin that is produced in the brainstem and which, by binding to the NK-1 receptor, can produce vomiting. Aprepitant specifically blocks the NK-1 receptor and, in combination with a 5-HT3 antagonist and dexamethasone, may relieve vomiting in patients who have not had their vomiting adequately controlled by the standard therapy alone.120,121 Mucositis, which can be a side-effect both of drugs and of radiotherapy to the head and neck, can be an important cause of distress to patients being treated for cancer. It causes pain and difficulties with nutrition. Until recently, little could

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be done to alleviate the problem, although many attempts have been made. A Cochrane review has identified 71 evaluable randomised trials using a wide variety of interventions to prevent or treat mucositis: aciclovir, allopurinol mouthrinse, aloe vera, amifostine, antibiotic pastille or paste, benzydamine, beta carotene, calcium phosphate, camomile, chlorhexidine, clarithromycin, folinic acid, glutamine, GM-CSF, honey, hydrolytic enzymes, ice chips, iseganan, keratinocyte GF, misonidazole, oral care, pentoxifylline, povidone, prednisone, propantheline, prostaglandin, sucralfate, traumeel, and zinc sulphate.122 Ice chips, antibiotic pastes and pastilles, amifostine, and hydrolytic enzymes were all of some benefit in reducing the severity of mucositis. More recently, growth factors have been used in attempts to maintain the integrity of the oral mucosa during chemotherapy. GM-CSF mouthwash is relatively ineffective, but palifermin (a recombinant humanised form of keratinocyte growth factor) shows promise as a mucosal protectant.123 Although diarrhoea and mucositis are often related toxicities – reflecting treatment-induced damage to the alimentary tract – diarrhoea can, in its own right, be a major problem after cancer treatment. There are two main categories of treatment-related diarrhoea: the acute and early; the late and chronic. There is no clear-cut relationship between the two syndromes: diarrhoea occurring acutely during treatment does not necessarily predict later problems with chronic diarrhoea. The topoisomerase-1 inhibitor irinotecan is a potent cause of acute diarrhoea. This can, through dehydration, electrolyte imbalance, and secondary infection, become life-threatening.124 The mechanism is believed to be mediated by gut bacteria which are able to reactivate an inactive metabolite of irinotecan. Other drugs, and radiotherapy, can cause diarrhoea by directly interfering with the ability of the gut lining to renew itself. Since irinotecan-induced diarrhoea arises through a specific mechanism it requires specific measures. Small-scale clinical studies have investigated the use of: Chinese herbal remedies; non absorbable antibiotics; activated charcoal; and glutamine. There is no clear evidence that any of these interventions are effective.121 In the absence of an effective prophylactic regimen, the best management

policy for irinotecan-induced diarrhoea is prompt diagnosis and supportive care with intravenous fluids, loperamide, and, if necessary, antibiotics. Patients and their carers need to be aware of the problem and encouraged to seek medical advice if they develop diarrhoea after treatment. One potential pitfall is that the diarrhoea occurs in two phases: at and around the time of injection, and a delayed-onset phase several days later. The apparent lessening of symptoms after the first phase may give rise to a false sense of security. The late effects of cancer treatment in general, and radiotherapy in particular, upon the bowel are becoming increasingly important. With the apparent rise in incidence of prostate cancer and with greater use of radiotherapy for rectal cancer, the number of patients surviving after pelvic irradiation is increasing. Many of these patients have significant, and occasionally debilitating, toxicity. These problems cannot simply be ignored, or regarded as the inevitable and unavoidable consequences of curative treatment. They can have a major impact on quality of life and should be investigated and treated properly. There are three main clinical syndromes: proctitis; anorectal dysfunction; small bowel diarrhoea. These syndromes may occur in conjunction with each other and this may lead to confusion. By taking the time to listen to patients’ accounts of their symptoms it is, however, usually possible to work out what is going on. The main symptoms of proctitis are rectal bleeding, mucus discharge from the rectum, irritation and pain. The hallmarks of proctitis are inflammation of the rectal wall, together with radiation-induced damage to the blood vessels (telangiectasia). The syndrome can be diagnosed on the basis of clinical history and proctoscopy. It usually occurs in patients who have a history of radical radiotherapy for prostate cancer and, in such patients, the radiation changes are often confined to the anterior wall of the rectum. Anorectal dysfunction can occur after radiotherapy alone but, more often is found in patients who have been treated with both surgery and radiotherapy. The classical symptoms are of rectal discomfort, mucoid rectal discharge, faecal seepage, and difficulties with defecation. These difficulties are often manifest as a feeling of

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incomplete emptying so that, no sooner does a patient think that they have finished emptying their bowels than they have to start all over again (‘prompt return to stool’). These sensations may recur frequently throughout the day and night, and so, with repeated and futile trips to the toilet, patients become exhausted and miserable. They attend clinic wearing a soiled pad and, when asked about their activities, are often housebound by virtue of embarrassment and fatigue. The pathophysiology of this problem is complex and probably involves a combination of decreased size of the rectal reservoir, decreased neuromuscular coordination, and deranged rectal sensation. The investigation of the syndrome is not straightforward: most of the useful information comes from the clinical history but specialised investigations, such as assessing rectal responses to pressure changes (manometry), may be helpful. Management is difficult. Promoting stool bulk may sometimes help, but can make things worse. If neuropathic pain is a dominating symptom then gabapentin, or a similar drug, may be helpful. Sometimes conversion to a permanent stoma offers the best quality of life. This option is often not considered by clinicians, since it implies therapeutic failure. However, for some patients with anorectal dysfunction, life is so unpleasant that a permanent stoma may seem a small price to pay for relief. Diarrhoea, when it occurs as a late effect of treatment for cancer, can have a variety of causes. ‘Radiation enteropathy’ is not a simple diagnosis. Rather it represents a constellation of derangements of bowel structure and function that are related to previous radiotherapy. As such, it has a variety of causes and mechanisms. Since there is no one intervention that will adequately treat all causes, it is usually necessary to investigate patients who have chronic severe diarrhoea following treatment (see Table 5.2). The reason that I have dealt with this issue at such length is because, in the UK at least, the problem is under-recognised, under-reported and under-treated. There are also other groups of patients with significant problems caused by treatment-related damage to normal tissues: infertility;125–127 cardiac damage;128–131 chronic fatigue and insomnia;132,133 and cognitive impair-

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ment.134–138 These individuals may also be at a disadvantage because of a neglectful or nihilistic attitude to their problems. The principles that apply to the management of the adverse effects of cancer treatment upon the bowel apply at other sites. We need to recognise the clinical syndromes associated with treatment-related toxicity; formulate scoring systems, based on subjective and objective data, that allow the severity of the problems to be graded;139 devise strategies for the appropriate investigation and assessment of patients with significant toxicity; and design, and prove the effectiveness of, interventions for each set of clinical problems. This process involves many individuals and specialties: patients; carers; nurses; family doctors; surgeons; oncologists; occupational therapists; dieticians; speech therapists; physiotherapists; specialist physicians (chest physicians, gastroenterologists, neurologists etc). There are very few MDTs dedicated to dealing with the problems that arise as a consequence of cancer treatment; most MDT’s see their role as providing expertise at and around the time of diagnosis with little in the way of longerterm commitment. This is mainly because, in terms of their remit and their targets, this is all that is asked of them. However, what we cannot do at any level, whether individual or administrative, is simply ignore the misery and distress caused by the adverse consequences of cancer treatment.

New techniques in radiation oncology Radiotherapy is a complex technological intervention and, as such, has been evolving over the past 110 years. The assumption is usually made that improved technology will lead to improved results. Although testable, this assumption is rarely tested. In part this reflects the difficulties of assessing complex clinical interventions, and in part it reflects an innate optimism: new is inevitably better. There is also an industrial agenda at work: just as a motor manufacturer wants to stimulate demand by adding new technologies (satellite navigation, cruise control, anti-lock brakes) to their vehicles, so the manufacturers of equipment

94 Cancer, care, and society Table 5.2

Causes of diarrhoea after treatment for colorectal cancer

Cause

Investigation

Management

Rapid transit Pancreatic insufficiency

Loperamide; octreotide Pancreatic enzyme supplements

Disaccharide intolerance

Measure transit time Stool fat globules Faecal elastase and chymotrypsin Serum or urinary isoamylase NBT-PABA test Pancreolauryl test Secretin-pancreozymin test Barium studies Colonoscopy Glucose-hydrogen breath test Culture of duodenal aspirate 75 SeHCAT test Barium follow-through 99m Tc-HPAO-labelled white blood cell scan Colonoscopy CT/MRI scan Colonoscopy CT/MRI scan Urinary 5-HIAA Plasma VIP Xylose absorption test

Co-existent disease Thyrotoxicosis Microscopic colitis Drug therapy CMV infection

Thyroid function Colonoscopy and biopsy Possible culprits Colonoscopy and biopsy

Stricture Blind loop (bacterial overgrowth) Bile salt malabsorption

Recurrent tumour New primary

Resection Metronidazole; probiotics Cholestyramine

Appropriate treatment Appropriate treatment

Modify diet (e.g. eliminate lactose); probiotics Carbimazole Steroids Trial of withdrawal Ganciclovir

NBT-PABA, N-benzoyl-L-tyrosyl-p-aminobenzoic acid; HCAT, 75Se homotaurocholate; HPAO, technetium hexamethylpropylene-amine oxime; 5-HIAA, 5-hydroxyindole-acetic acid; VIP, vasoactive intestinal peptide; CMV, cytomegalovirus.

used for radiotherapy wish to convince us that we really need all the additional capabilities provided by this year’s machine and that anything more than 2 years old is, effectively, obsolete. Some of the improvements are, like anti-lock brakes, genuinely useful features. Others, like leather seats, may only be of cosmetic interest. This is where rigorous evaluation should enter the process, but so rarely does. This is particularly true in the competitive US market where radiotherapy departments compete for custom and where it is important, for marketing purposes, to be seen to have the most up-to-date equipment. There is a real danger that the technology may drive a spurious ‘need’ rather than a genuine need driving the

development of necessary technology. Future developments in the technology of the delivery of radiation treatment will occur against this complex, confusing, and not always logical background. Conformal radiotherapy

The principle of conformal therapy is not new, radiotherapists have always sought to shape the treated volume to conform to that of the tumour. The technology has however changed. Instead of cumbersome heavy blocks manually inserted into the path of the beam, we now have the ability to shape beams using devices built in to the head of the treatment machine: multi-leaf collimation. A series of finger-like processes project into the beam

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and their position can be adjusted, using integrated software, to produce complex shapes. The flexibility provided by this approach means that we can more accurately shape the volume that receives the highest dose of radiation, and so can more reliably spare adjacent normal tissues. Potentially, this may reduce adverse effects from any given dose of treatment or, conversely, permit the dose to be increased (with the possibility of a greater probability of controlling the tumour), while keeping the damage to normal tissues within acceptable limits.112,140–142 Intensity-modulated radiation therapy (IMRT)

In conformal radiotherapy each beam used to treat the tumour is of uniform intensity. If we consider the beam to be composed of little packets of energy (‘photons’), then fluence is the technical term for the number of packets crossing a specified area in unit time. The beams used for straightforward conformal therapy have equal fluence across the profile of the beam. However, if we allow the intensity of the beam to vary across its profile, by considering the beam to be composed of a multitude of smaller beams each with its own fluence, then this gives us greater ability to sculpt and shape the dose to the target volume: a procedure that has been called dose-painting.143 This is the essential concept behind IMRT – the intensity of the beam is altered (modulated) in order to provide more flexible geometry. IMRT is particularly valuable if we are trying to treat a concave treatment volume, for example when a tumour encases a vulnerable normal tissue such as the spinal cord. The techniques used for IMRT are complex both in principle and in practice,144 but offer the real possibility of being able to deliver effective radiation doses to tumours previously considered to be untreatable, or the possibility of increasing tumour doses without increasing the risks of damage to normal tissues. Image-guided radiotherapy

People move, even when they are lying still. Our lungs inflate and deflate, peristaltic waves ripple along our intestines, our bladders slowly fill, our hearts beat. In the old days of radiotherapy this did not matter very much. The volumes we treated

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were, relative to the displacements caused by respiration or peristalsis, large. Nowadays, as we use conformal radiotherapy (XRT) and IMRT, the target volumes are smaller and even minor movements will be important – in order to treat the tumour you have to hit the target, and if the target moves beyond the beam the tumour will not be treated. As part of our planning procedures we can generate beam’s-eye views: images of what the beam ought to be ‘seeing’ as it traverses the patient. If we store these images within the machine used to treat the patient we can use them to control whether or not the beam of radiation is switched on. Only when there is acceptable congruence between what the beam ‘sees’ and what it ought to be ‘seeing’ will the beam be switched on. If, as a result of movement, the target moves outwith the beam, it will switch itself off. This is the basic principle upon which image-guided therapy is based. Although the principle is simple, the procedures involved are complex – how good does the match have to be between reality and the image before the congruence is acceptable? How do you strike a compromise between perfection and feasibility?145,146 If it takes an hour to treat one patient because of an insistence on absolute fidelity then this, in a busy department, is simply not a practical proposition. Target definition

In order to hit a target, you first have to define it. In the past 30 years we have moved from a very basic approach to target definition, two plain Xray pictures taken at right angles to each other, through 3D imaging using CT, to functional imaging using CT/PET fusion.147 Now we treat not just shadows, but shadows with the metabolic properties of active cancer. Fractionation – a continuing tale

When given with curative intent, radiotherapy is usually given as a series of treatments (‘fractions’) over a period of 3–7 weeks. The historical origins of this practice were physical, and to some extent economic, rather than biological but there are, nevertheless, good biological reasons for fractionating a course of radiotherapy.148 In crude terms, fractionation enables us to do more damage to tumours and less damage to normal tissues. The

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problem is that we have, even after more than 100 years, surprisingly little information upon which to make rational choices concerning optimal fractionation regimens for specific tumour types.149 This lack of basic information manifests itself as a wide variety of practice.150 This lack of uniformity has implications that go well beyond the care of individual patients. If courses of radiotherapy are prolonged, for no reason other than custom, then this reduces overall capacity and may lead to increases in waiting times for treatment. Patients who wait longer for treatment may be less likely to be cured.151 Since dose-per-fraction is a major influence on the late effects of radiation, simply decreasing the number of treatment sessions will not solve the problem of limited capacity. Over the next few years we should expect a series of clinical trials asking simple questions about optimal radiotherapeutic schedules: these trials may not directly improve cure rates but should enable us to make best use of our limited resources. Combining therapies

Drugs and radiotherapy may act synergistically. The effect of both, when given together, may be greater than expected by simple addition: in terms of tumour control, it may be possible to add two and two to make five. This proposition always has to be considered in the light of the therapeutic ratio: it only makes good sense if there is synergy against the tumour and less synergistic effect upon the normal tissues. We have some evidence from head and neck cancer that synchronous chemotherapy and radiation is more effective than radiation alone,152 but there is also some evidence that toxicity may also be increased and there is, as yet, no unequivocal evidence that the therapeutic ratio is improved. One interesting way forward is to combine targeted therapies with radiation and there is already one trial suggesting that adding cetuximab, which targets the epidermal growth factor receptor, to radiation is more effective than radiotherapy alone.153 Photodynamic therapy

Photodynamic therapy (PDT) is based on the principle that tumours will specifically take up chemicals (‘photosensitisers’) that, in response to

illumination using visible light, will produce singlet oxygen molecules. Singlet oxygen is locally toxic and can produce cell death and obliterative vascular changes. These toxic effects are only found where there has been both uptake of the chemical and deposition of light. The selectivity of uptake with currently available photosensitisers is not particularly impressive: the tumour-tonormal tissue ratios are typically around 2 to 3. With current technology, the benefits from PDT at present are more to do with the localisation of light penetration, and subsequent sensitisation, than any selectivity of the photochemical for tumour cells. The approach is only feasible for tumours that are accessible and relatively superficial. As technology develops, more tumours will be accessible using fibre optic sources, and higher light energy will enable the light to penetrate more deeply into tumours. Currently the limit of penetration is between 5 mm and 10 mm. A variety of photosensitisers are now available for clinical use.154,155 A similar approach (‘photodynamic detection’, PDD) can be used for delineating the extent of a tumour during surgery. If a brain tumour specifically takes up a photosensitiser then the neurosurgeon can assess its extent, during surgery, by simply applying light of the relevant wavelength to the area of interest. Where there is tumour, there is detectable fluorescence.

New techniques in surgery Minimally invasive surgery

Surgery has traditionally used long incisions that permit direct inspection of the surgical field. The morbidity associated with surgery and the handling of sensitive tissues, such as the gut, can be considerable, and the typical hospital stay for a patient who needed abdominal surgery for cancer was 2–3 weeks. The same operation may now, using minimally invasive techniques, require only 3–5 days in hospital. The surgeon uses a laparoscope, inserted through a small (‘keyhole’) incision to view the tumour and adjacent organs. The surgical procedure is performed using specially designed instruments which can be introduced through

Developments in the management of cancer

other keyhole incisions. This type of surgery was previously confined to specialist centres but is now widely available and may, over the longer term, improve outcomes in cancer surgery. Given these technological advances, the question now becomes – do we need the surgeon? Robotic techniques are being developed to improve the results of surgery for cancer.156 At the moment the robotic devices supplement, rather than replace, the skills of the surgeon, but a future in which the surgeon is not the primary operator is at least conceivable. Localised ablation

Extreme heat (radiofrequency ablation) or extreme cold (cryoablation) can be delivered to localised areas using probes that can be introduced laparoscopically. This permits the destruction of tumours, for example liver metastases, that cannot be removed surgically. Although unlikely to cure, these ablative procedures may prolong life in patients with unresectable metastatic disease. Liver resection

Until fairly recently the idea that liver metastases could be resected with a view to curing patients was somewhat heretical. However, improvements in surgical technique mean that it is now commonplace to perform extensive surgery in an attempt to cure patients with liver metastases. The surgery is surprisingly well tolerated, and the questions we now must ask concern the role of chemotherapy as either a preparative regimen for patients about to have liver surgery or as postoperative adjuvant treatment in those patients whose liver disease has, apparently, been completely removed. Improved reconstruction

Improvements in plastic and reconstructive surgery mean that large tissue defects can be replaced with tissue that is both functionally and cosmetically acceptable. This has meant that surgeons have been able to attempt more radical operations for patients with sarcomas or cancers of the head and neck. It has also meant that many women who have had mastectomy for breast cancer will now be routinely offered a reconstructive procedure.

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Intra-operative radiotherapy, radiosurgery

The best way for a radiotherapist to visualise a tumour is to see it at open operation. A target that can be seen is a target that can be accurately irradiated, and so there is a compelling logic to the notion that radiotherapy might most appropriately be given at the time of surgical removal of a tumour. There are several obstacles to this logical approach. Most treatment machines are static and heavy so, either you have to move an anaesthetised patient with an open wound through the hospital to the radiotherapy department, or you must build a specialised operating theatre around a linear accelerator. Neither approach is really feasible for routine care. Another problem is biological: by giving treatment in a single session during the surgical procedure we sacrifice any benefits associated with fractionation. For established tumours this could be a limiting factor, but for microscopic residual disease left in the tumour bed this may be less of a problem.157 Recently a portable source of therapeutic Xrays has been developed that is no larger than a domestic electric drill. This means that it is now possible to deliver intra-operative radiotherapy without having to move the patient or having to build a specialised operating theatre. The technology is currently being evaluated in a randomised trial in the conservative treatment of breast cancer,158 and may, in the future, have wider application. The gamma knife uses a somewhat different approach and has been widely used in the treatment of tumours and other abnormalities within the central nervous system.159,160 The gamma knife is essentially a focused array of cobalt beams that can be located using a stereotactic frame. The volume of interest is placed, using co-ordinates determined from diagnostic images, at the centre of the converging beams and so a high dose (12– 20 Gy) can be delivered in a short overall time.

Developments in pain control and palliative care A detailed discussion of this topic is well beyond the scope of this chapter and many of the issues are covered elsewhere in this book. The key

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developments in this area over recent years have been: better understanding of the molecular basis of individual variation in response to analgesics; better understanding of the pathophysiology of cancer-related pain; better delivery systems for analgesics (transdermal patches; and implanted pumps for spinal analgesia).

Summary and conclusions On the basis of the developments discussed in this chapter it is possible to imagine two main directions of travel for the management of cancer in the future. We are in the middle of a dark wood facing a choice between two paths. Each path will take us to a distinct future: one future engendering cautious optimism; the other, considerable concern. We could call these futures A (the bleak outlook) and B (the more hopeful prospect). Future A

The practice of oncology is left entirely to market forces. New drugs and new technologies are promoted on the basis of theoretical benefit, and the promise of increased income for their purveyors, and are never subjected to proper scrutiny. Clinicians and institutions adopt treatments because not to have them would lead to a loss of competitive edge. Compared to older, cheaper, interventions the new treatments may not be particularly effective and may cause more toxicity. The costs spiral out of control. Money is spent on drugs and technology and is not available for providing care. With the emphasis on the generation of income there is a decline in the importance and status of supportive care (unless it involves prescribing yet more expensive new drugs). Nurses are relegated to technical and custodial tasks; sometimes they are allowed to perform duties hitherto the preserve of physicians. This is mainly because they perform the tasks more competently and for less money. In an income-driven system there is no time to stop, to listen, or to console. Only the rich can afford treatment and the principle of equal access for all is soon relinquished. Any improvements in outcome are small and can apply only to a small proportion of

the population. A multiply-tiered system of care emerges, with a significant proportion of the population left without adequate care. Patients are empowered only in so far as their ability to pay and, with the belief that money can conquer all, those who can afford it are only too happy to comply with a system that offers them expensive new therapies. Insurance companies establish the right to obtain access to genetic information on individuals seeking insurance. They use this information to set premiums based on individual genetic risks and some people may, on the basis of their SNP pattern, be denied any insurance at all or be charged exorbitant premiums. By eliminating their own risks, through the denial of service, the insurance companies are able to increase their profitability. Public disillusion with the limited effectiveness and availability of expensive interventions combines with a decrease in respect for a profession seen to be motivated primarily by financial acquisitiveness, and causes a shift towards unproven complementary therapies. At least these treatments are usually cheaper than the conventional therapies, they are almost invariably less toxic and involve a degree of personal contact that, in the money-is-time world of orthodox practice, is often lacking. People who use complementary therapies may not live any longer, but at least they feel better. There is little money to be made from the prevention of cancer, or from predictive and prognostic testing, and so these fields are left unexplored. The incidence of cancer rises along with the money to be made from it. A few do a little better, the majority fare substantially worse and, overall, the health and well-being of humankind suffers. Future B

The practice of oncology is set firmly on a personal basis with each individual put at the centre of all processes and decisions. Ability to pay has no effect on the choices that are offered. The sharing of information (about choices, about therapies, about risks, about harms, about hopes, about concerns, about the extent to which knowledge is desired) is a crucial part of the therapeutic

Developments in the management of cancer

process. There are no stock solutions. Each person affected by cancer has the opportunity and support to enable them to navigate their own path through the difficulties and problems that they encounter. Predictive and prognostic tests are a key part of the decision-making process. There is as much investment in this area as there is devising new treatments. As a result, the expense and misery caused by unnecessary and futile treatments is avoided. Patients who have been cured surgically are not given additional treatments ‘just in case’. Patients are not given drugs to which their tumours will not respond, or to which their normal tissues are unduly sensitive. Targeted therapies become the rule, not the exception. Specific abnormalities associated with specific cancers are dealt with by specific treatments: no more blunderbuss. Complementary therapies are not simply ignored or dismissed. They are investigated properly, and those that are of proven physical or psychological benefit are made freely available. Those that are harmful or ineffective are quietly forgotten. Multidisciplinary teams take continuing interest in patients’ management. They do not restrict their role to the initial phases of diagnosis and treatment but concern themselves with the longterm effects of management and facilitate the rehabilitation of patients following successful treatment. The main emphasis in the management of cancer moves towards prevention. The tools of molecular biology are harnessed to explore key questions concerning the interactions between environment and inheritance. By understanding why a particular person developed a particular type of cancer at a particular time we take the first steps towards preventing similar individuals developing similar tumours in the future. We will adopt less patronising and more realistic approaches to advising the general public on how to adopt a more healthy approach to life. There will be less middle-class preaching and more actual engagement. By improving overall socio-economic standards, by reducing the size of the gap between the very rich and the very poor, and by improving education we will have dealt with many of the environmental factors that contribute to the incidence of cancer. Smoking will be banned in public

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places throughout the UK. People will give up smoking, not because they are forced to, but because they fail to see any point in continuing to smoke. The incidence of cancer falls, those people who are unfortunate enough to develop the disease are treated with interventions of proven effectiveness and are actively involved in all decisions concerning their care. The overall burden of cancer is reduced and the health of the community improves. Conclusion

These two futures are, of course, cartoons. The reality will lie somewhere between the two extremes. We do, however, as professionals working in health care, have some power to shape events. Many of the unpalatable aspects of Future A are already a reality. This has happened because we, and our colleagues, have reacted naively to developments. We should not be reacting to developments in cancer care. We should be shaping them, and shaping them for the betterment of all humankind.

References 1. Corner J., Wright D., Gunaratnum Y., McDonald J.W. and Foster C. (2007). The research priorities of patients attending UK cancer treatment centres: findings from a modified nominal group study. British Journal of Cancer 96, 875–881. 2. Sackett D.L. (2002). Clinical epidemiology. What, who, and whither. Journal of Clinical Epidemiology 55, 1161–1166. 3. Straus S.E. and McAlister F.A. (2000). Evidence-based medicine: a commentary on common criticisms. Canadian Medical Association Journal 163, 837–841. 4. Bentzen S.M. (1998). Towards evidence based radiation oncology: improving the design, analysis, and reporting of clinical outcome studies in radiotherapy [comment]. Radiotherapy and Oncology 46, 5–18. 5. McDonald L. (2001). Florence Nightingale and the early origins of evidence-based nursing. Evidence Based Nursing 4, 68–69. 6. Overgaard J. and Bentzen S.M. (1998). Evidence based radiation oncology. Radiotherapy and Oncology 46, 1–3. 7. Pape T.M. (2003). Evidence-based nursing practice: to infinity and beyond. Journal of Continuing Education in Nursing 34, 154–161; quiz 89–90.

100 Cancer, care, and society 8. Munro A.J. (2001). Forum for applied cancer education and training. European Journal of Cancer Care 10, 212–220. 9. The Cochrane Collaboration. www.cochrane.org/ reviews/index.htm (accessed 13 September 2007). 10. World Health Organisation. (2006). WHO Cancer Control Programme. Geneva: World Health Organisation. www.who.int/cancer/en/ (accessed 24 July 2007). 11. World Health Organisation. (2005). Global Programming Note: 2005–2007 Call for Resource Mobilisation and Engagement Opportunities. Geneva: World Health Organisation. 12. World Health Organisation. (2006). WHO Immunization Financing. Geneva: World Health Organisation. www.who.int/immunization_financing/countries/uga/ about/en/index.html (accessed 24 July 2007). 13. Anderson B.O., Shyyan R., Eniu A. et al. (2006). Breast cancer in limited-resource countries: an overview of the Breast Health Global Initiative 2005 guidelines. Breast Journal 12(suppl. 1), S3–15. 14. Parkin D.M. and Fernandez L.M. (2006). Use of statistics to assess the global burden of breast cancer. Breast Journal 12(suppl. 1), S70–80. 15. Department of Health. (2000). The NHS Cancer Plan: a Plan for Investment, a Plan for Reform. London: Department of Health. 16. Berrino F. (2003). The EUROCARE Study: strengths, limitations and perspectives of population-based, comparative survival studies. Annals of Oncology 14(suppl. 5), v9–13. 17. Berrino F., Sant M., Verdecchia A. et al. (1995). Survival of Cancer Patients in Europe. Lyons: International Agency for Research on Cancer. 18. Eurocare Working Group Resource Centre. (2003). Eurocare: Survival of Cancer Patients in Europe. www. eurocare.it/ (accessed 24 July 2007). 19. Munro A.J. (2005). Keynote comment: Deprivation and survival in patients with cancer: we know so much, but do so little. The Lancet Oncology 6, 912–913. 20. Mattke S., Kelley E., Scherer P., Hurst J. and Gil Lapetra M.-L. (2006). Health Care Quality Indicators Project – Initial Indicators Report. Paris: Organisation for Economic Cooperation and Development. 21. Boyle P., Yasantha Ariyaratne M.A., Barrington R. et al. Tobacco: deadly in any form or disguise. Lancet 367, 1710–1712. 22. Towler B., Irwig L., Glasziou P. et al. (1998). A systematic review of the effects of screening for colorectal cancer using the faecal occult blood test, hemoccult. British Medical Journal 317, 559–565. 23. Atkin W.S. (2006) Impending or pending? The national bowel cancer screening programme. British Medical Journal 332, 742–743.

24. Freedman D.A., Petitti D.B. and Robins J.M. (2004). On the efficacy of screening for breast cancer. International Journal of Epidemiology 33, 43–55. 25. Olsen O. and Gotzsche P.C. (2001). Screening for breast cancer with mammography (Cochrane Review). The Cochrane Library, Issue 4. Oxford: Update Software. 26. Gotzsche P.C. (2004). On the benefits and harms of screening for breast cancer. International Journal of Epidemiology 33, 56–64; discussion 9–73. 27. Strauss G.M., Dominioni L., Jett J.R. et al. (2005). Como international conference position statement: lung cancer screening for early diagnosis 5 years after the 1998 Varese conference. Chest 127, 1146–1151. 28. Lagergren J. (2006). Controversies surrounding body mass, reflux, and risk of oesophageal adenocarcinoma. The Lancet Oncology 7, 347–349. 29. Calman K. and Hine D. (1995). A Policy Framework for Commissioning Cancer Services. London: Department of Health. 30. Hall P. and Weaver L. (2001). Interdisciplinary education and teamwork: a long and winding road. Medical Education 35, 867–875. 31. Allirajah D., Herbst K. and Morgan L. (2006). Free at the point of delivery? Exposing the hidden cost of hospital travel and parking for cancer patients. London: Macmillan Cancer Relief. 32. Board of the Faculty of Clinical Oncology. (2004). Guidance on the Development and Management of Devolved Radiotherapy Services. London: Royal College of Radiologists. 33. Department of Health. (2004). Manual for Cancer Services. London: Department of Health. 34. Forrest L.M., McMillan D.C., McArdle C.S. and Dunlop D.J. (2005). An evaluation of the impact of a multidisciplinary team, in a single centre, on treatment and survival in patients with inoperable non-small-cell lung cancer. British Journal of Cancer 93, 977–978. 35. Board of the Faculty of Clinical Oncology. (2002). Breaking the Mould: Roles, Responsibilities and Skills Mix in Departments of Clinical Oncology. London: The Royal College of Radiologists, The Society and The College of Radiographers, The Royal College of Nursing, The Institute of Physics and Engineering in Medicine. 36. Sennett R. (2006). The Culture of the New Capitalism. New Haven, CT: Yale University Press. 37. McNair R.P. (2005). The case for educating health care students in professionalism as the core content of interprofessional education. Medical Education 39, 456–464. 38. Mitchell B.S., McCrorie P. and Sedgwick P. (2004). Student attitudes towards anatomy teaching and learning in a multiprofessional context. Medical Education 38, 737–748.

Developments in the management of cancer 39. Rudland J.R. and Mires G.J. (2005). Characteristics of doctors and nurses as perceived by students entering medical school: implications for shared teaching. Medical Education 39, 448–455. 40. Curzon P., Wilson J. and Whitney G. (2005). Successful strategies of older people for finding information. Interacting with Computers 17, 660–671. 41. Dickinson A., Newell A.F., Smith M.J. and Hill R. (2005). Introducing the internet to the over-60’s: developing an email system for older novice computer users. Interacting with Computers 17, 621–642. 42. Milne S.A.D., Carmichael A., Sloan D., Eisma E. and Gregor P. (2005). Are guidelines enough? An introduction to designing web sites accessible to older people. IBM Systems Journal 44, 557–571. 43. Division of Health Care Services. (1996). Telemedicine: A Guide to Assessing Telecommunications in Health Care Committee on Evaluating Clinical Applications of Telemedicine. Washington, DC: Institute of Medicine. 44. Virchow R. (1855) Every cell from a cell. Virchows Archiv VIII, 3. 45. Ames B.N. and Gold L.S. (1990). Too many rodent carcinogens: mitogenesis increases mutagenesis. Science 249, 970–971. 46. Fraga C.G., Shigenaga M.K., Park J.W., Degan P. and Ames B.N. (1990). Oxidative damage to DNA during aging: 8-hydroxy-2′-deoxyguanosine in rat organ DNA and urine. Proceedings of the National Academy of Sciences of the USA 87, 4533–4537. 47. Evans G.A. (2000). Designer science and the ‘omic’ revolution. Nature Biotechnology 18, 27. 48. Leonard R.C., Lind M., Twelves C. et al. (2004). Conventional adjuvant chemotherapy versus single-cycle, autograft-supported, high-dose, late-intensification chemotherapy in high-risk breast cancer patients: a randomized trial. Journal of the National Cancer Institute 96,1076–1083. 49. Slaughter D.P., Southwick H.W. and Smejkal W. (1953). Field cancerization in oral stratified squamous epithelium; clinical implications of multicentric origin. Cancer 6, 963–968. 50. Taixiang W., Munro A.J. and Guanjian L. (2005) Chinese medical herbs for chemotherapy side effects in colorectal cancer patients (Cochrane Review). The Cochrane Library, Issue 1. Oxford: Update Software. 51. Ernst E. (2001). A primer of complementary and alternative medicine commonly used by cancer patients. Medical Journal of Australia 174, 88–92. 52. Barnes D.M., Davis A.J., Moran T., Portillo C.J. and Koenig B.A. (1998). Informed consent in a multicultural cancer patient population: implications for nursing practice. Nursing Ethics 5, 412–423.

101

53. Siegelman M.H. (1964). Advances in the supportive care of children with acute leukemia. Medical Record and Annals 57, 439–441. 54. Berger A.M., Portenoy R.K. and Weissman D.E. (2002). Principles and Practice of Palliative Care and Supportive Oncology. New York: Lippincott Williams and Wilkins. 55. Faithfull S. and Wells E.M. (2003). Supportive Care in Radiotherapy. Edinburgh: Churchill Livingstone. 56. Deshields T., Tibbs T., Fan M.Y. et al. (2005). Ending treatment: the course of emotional adjustment and quality of life among breast cancer survivors immediately following radiation therapy. Supportive Care in Cancer 13, 1018–1026. 57. Hipkins J., Whitworth M., Tarrier N. and Jayson G. (2004). Social support, anxiety and depression after chemotherapy for ovarian cancer: a prospective study. British Journal of Health Psychology 9, 569– 581. 58. Munro A.J. and Potter S. (1996). A quantitative approach to the distress caused by symptoms in patients treated with radical radiotherapy. British Journal of Cancer 74, 640–647. 59. Shepherd K.L. and Fisher S.E. (2004). Prospective evaluation of quality of life in patients with oral and oropharyngeal cancer: from diagnosis to three months posttreatment. Oral Oncology 40, 751– 757. 60. Stam H., Grootenhuis M.A., Brons P.P., Caron H.N. and Last BF. (2005). Health-related quality of life in children and emotional reactions of parents following completion of cancer treatment. Pediatric Blood and Cancer 47, 312–319. 61. Chabner B.A. (2003). Cancer therapy and survivorship. Cancer Epidemiology Biomarkers and Prevention 12, 269s. 62. National Cancer Institute. (2006). Cancer Survivorship Research. http://dccps.nci.nih.gov/ocs/ (accessed 24 July 2007). 63. Bradley C.J. (2005). The need for online information on the economic consequences of cancer diagnosis, treatment, and survivorship. Journal of Medical Internet Research 7, e29. http://www.pubmedcentral.nih.gov/ articlerender.fcgi?artid=1550665 (accessed 3 August 2007). 64. Demark-Wahnefried W., Aziz N.M., Rowland J.H. and Pinto B.M. (2005). Riding the crest of the teachable moment: promoting long-term health after the diagnosis of cancer. Journal of Clinical Oncology 23, 5814–5830. 65. Robison L.L. (2004). Cancer survivorship: unique opportunities for research. Cancer Epidemiology Biomarkers and Prevention 13, 1093.

102 Cancer, care, and society 66. Zebrack B.J. and Zeltzer L.K. (2003). Quality of life issues and cancer survivorship. Current Problems in Cancer 27, 198–211. 67. World Health Organisation. (2002). The World Health Report 2002 – Reducing Risks, Promoting Healthy Life. Geneva: World Health Organisation. 68. Doll R. and Peto R. (1981). The causes of cancer: quantitative estimates of avoidable risks of cancer in the United States today. Journal of the National Cancer Institute 66, 1191–1308. 69. Burke W. and Press N. (2006). Ethical obligations and counseling challenges in cancer genetics. Journal of the National Comprehensive Cancer Network 4, 185–191. 70. Danaei G., Vander Hoorn S., Lopez A.D., Murray C.J. and Ezzati M. (2005). Causes of cancer in the world: comparative risk assessment of nine behavioural and environmental risk factors. Lancet 366, 1784–1793. 71. Evans J.P., Skrzynia C. and Burke W. (2001). The complexities of predictive genetic testing. British Medical Journal 322, 1052–1056. 72. Engle L.J., Simpson C.L. and Landers J.E. (2006). Using high-throughput SNP technologies to study cancer. Oncogene 25, 1594–1601. 73. Hu Z., Huo X., Lu D. et al. (2005). Functional polymorphisms of matrix metalloproteinase-9 are associated with risk of occurrence and metastasis of lung cancer. Clinical Cancer Research 11, 5433–5439. 74. Crum N.F., Riffenburgh R.H., Wegner S. et al. (2006). Comparisons of causes of death and mortality rates among HIV-infected persons: analysis of the pre-, early, and late HAART (highly active antiretroviral therapy) eras. Journal of Acquired Immune Deficiency Syndrome 41, 194–200. 75. Levi F., Randimbison L., Te V.C., Franceschi S. and La Vecchia C. (2004). Kaposi’s sarcoma in Vaud and Neuchatel, Switzerland, 1978–2002. European Journal of Cancer 40, 1630–1633. 76. Harper D.M., Franco E.L., Wheeler C. et al. (2004). Efficacy of a bivalent L1 virus-like particle vaccine in prevention of infection with human papillomavirus types 16 and 18 in young women: a randomized controlled trial. Lancet 364, 1757–1765. 77. Villa L.L., Costa R.L.R., Petta C.A. et al. (2005). Prophylactic quadrivalent human papillomavirus (types 6, 11, 16, and 18) L1 virus-like particle vaccine in young women: a randomised double-blind placebo controlled multicentre phase II efficacy trial. The Lancet Oncology 6, 271–278. 78. Zimmerman R.K. (2006). Ethical analysis of HPV vaccine policy options. Vaccine 24, 4812–4820. 79. Beasley R.P., Lin C.-C., Hwang L.-Y. and Chien C.-S. (1981). Hepatocellular carcinoma and hepatitis B

80.

81.

82.

83.

84.

85.

86.

87.

88.

89.

90.

91.

92.

virus: a prospective study of 22 707 men in Taiwan. Lancet 318, 1129–1133. Chang M.H., Chen T.H., Hsu H.M. et al. (2005). Prevention of hepatocellular carcinoma by universal vaccination against hepatitis B virus: the effect and problems. Clinical Cancer Research 11, 7953– 7957. Kao J.H. and Chen D.S. (2005). Changing disease burden of hepatocellular carcinoma in the Far East and Southeast Asia. Liver International 25, 696–703. Bessa X., Elizalde J.I., Boix L. et al. (2001). Lack of prognostic influence of circulating tumor cells in peripheral blood of patients with colorectal cancer. Gastroenterology 120, 1084–1092. Bustin S.A. and Mueller R. (2006). Real-time reverse transcription PCR and the detection of occult disease in colorectal cancer. Molecular Aspects of Medicine 27, 192–223. Vlems F.A., Ruers T.J.M., Punt C.J.A., Wobbes T. and van Muijen G.N.P. (2003). Relevance of disseminated tumour cells in blood and bone marrow of patients with solid epithelial tumours in perspective. European Journal of Surgical Oncology 29, 289–302. Smirnov D.A., Foulk B.W., Doyle G.V. et al. (2006). Global gene expression profiling of circulating endothelial cells in patients with metastatic carcinomas. Cancer Research 66, 2918–2922. Science Policy Section, Royal Society of London. (2005). Personalised Medicines: Hopes and Realities. London: The Royal Society of London. Langreth B.R. and Waldholz M. (1999). New era of personalized medicine: targeting drugs for each unique genetic profile. Oncologist 4, 426–427. World Health Organisation. (2002). Genomics and World Health: Report of the Advisory Committee on Health Research. Geneva: World Health Organisation. Evans J.A., Poneros J.M., Bouma B.E. et al. (2006). Optical coherence tomography to identify intramucosal carcinoma and highgrade dysplasia in Barrett’s esophagus. Clinical Gastroenterology and Hepatology 4, 38–43. von Schulthess G.K., Steinert H.C. and Hany T.F. (2006). Integrated PET/CT: current applications and future directions. Radiology 238, 405–422. Goerres G.W., von Schulthess G.K. and Steinert H.C. (2004). Why most PET of lung and head-and-neck cancer will be PET/CT. Journal of Nuclear Medicine 45(suppl. 1), 66S–71S. Saranovic D., Djuric-Stefanovic A., Ivanovic A., Masulovic D. and Pesko P. (2005). Fluoroscopically guided insertion of self-expandable metal esophageal stents for palliative treatment of patients with malig-

Developments in the management of cancer

93.

94.

95.

96.

97.

98.

99.

100.

101. 102.

103. 104.

105.

nant stenosis of esophagus and cardia: comparison of uncovered and covered stent types. Diseases of the Esophagus 18, 230–238. Wenger U., Johnsson E., Bergquist H. et al. (2005). Health economic evaluation of stent or endoluminal brachytherapy as a palliative strategy in patients with incurable cancer of the oesophagus or gastrooesophageal junction: results of a randomized clinical trial. European Journal of Gastroenterology and Hepatology 17, 1369–1377. Rowell N.P. and Gleeson F.V. (2002). Steroids, radiotherapy, chemotherapy and stents for superior vena caval obstruction in carcinoma of the bronchus: a systematic review. Clinical Oncology 14, 338–351. Maire F., Hammel P., Ponsot P. et al. (2006). Longterm outcome of biliary and duodenal stents in palliative treatment of patients with unresectable adenocarcinoma of the head of pancreas. American Journal of Gastroenterology 101, 735–742. Walser E.M. (2005). Stent placement for tracheobronchial disease. European Journal of Radiology 55, 321–330. Munro N.P., Woodhams S., Nawrocki J.D., Fletcher M.S. and Thomas P.J. (2003). The role of transarterial embolization in the treatment of renal cell carcinoma. BJU International 92, 240–244. Brown D.B., Pilgram T.K., Darcy M.D. et al. (2005). Hepatic arterial chemoembolization for hepatocellular carcinoma: comparison of survival rates with different embolic agents. Journal of Vascular and Interventional Radiology 16, 1661–1666. Rugendorff E.W. and Wilson T. (1997). The history of urology on postage stamps and cancellations. Journal of Urology 158, 1335–1339. DiMasi J.A., Hansen R.W. and Grabowski H.G. (2003). The price of innovation: new estimates of drug development costs. Journal of Health Economics 22, 151–185. Wadman M. (2006). The quiet rise of the clinical contractor. Nature 441, 22–23. Delaney B. (2006). Is society losing control of the medical research agenda? British Medical Journal 332, 1063–1064. Sawyers C. (2004). Targeted cancer therapy. Nature 432, 294–297. Fukuoka M., Yano S., Giaccone G. et al. (2003). Multi-institutional randomized phase II trial of gefitinib for previously treated patients with advanced nonsmall-cell lung cancer. Journal of Clinical Oncology 21, 2237–2246. Johnson D.H. and Arteaga C.L. (2003). Gefitinib in recurrent non-small-cell lung cancer: an IDEAL trial? Journal of Clinical Oncology 21, 2227–2229.

103

106. Kris M.G., Natale R.B., Herbst R.S. et al. (2003). Efficacy of gefitinib, an inhibitor of the epidermal growth factor receptor tyrosine kinase, in symptomatic patients with non-small cell lung cancer: a randomized trial. Journal of the American Medical Association 290, 2149–2158. 107. Dowell J.E. and Minna J.D. (2005). Chasing mutations in the epidermal growth factor in lung cancer. New England Journal of Medicine 352, 830–832. 108. Verma I.M. and Weitzman M.D. (2005). Gene therapy: twenty-first century medicine. Annual Review of Biochemistry 74, 711–738. 109. Pai S.I., Lin Y.Y., Macaes B. et al. (2006). Prospects of RNA interference therapy for cancer. Gene Therapy 13, 464–477. 110. Travis L.B., Rabkin C.S., Brown L.M. et al. (2006). Cancer survivorship – genetic susceptibility and second primary cancers: research strategies and recommendations. Journal of the National Cancer Institute 98, 15–25. 111. Di Costanzo F., Sdrobolini A. and Gasperoni S. Capecitabine, a new oral fluoropyrimidine for the treatment of colorectal cancer. Critical Reviews in Oncology and Hematology 35, 101–108. 112. Dearnaley D.P., Khoo V.S., Norman A.R. et al. (1999). Comparison of radiation side-effects of conformal and conventional radiotherapy in prostate cancer: a randomised trial. Lancet 353, 267–272. 113. Rouits E., Boisdron-Celle M., Dumont A. et al. Relevance of different UGT1A1 polymorphisms in irinotecan-induced toxicity: a molecular and clinical study of 75 patients. Clinical Cancer Research 10, 5151–5159. 114. Brizel D. (2003). Does amifostine have a role in chemoradiation treatment? The Lancet Oncology 4, 378–380. 115. Overgaard J. (2003). Does amifostine have a role in chemoradiation treatment? The Lancet Oncology 4, 380–381. 116. Sasse A.D., Clark L.G., Sasse E.C. and Clark O.A. (2006). Amifostine reduces side effects and improves complete response rate during radiotherapy: results of a metaanalysis. International Journal of Radiation Oncology Biology Physics 64, 784–791. 117. Schuchter L.M., Hensley M.L., Meropol N.J. and Winer E.P. (2002). 2002 update of recommendations for the use of chemotherapy and radiotherapy protectants: clinical practice guidelines of the American Society of Clinical Oncology. Journal of Clinical Oncology 20, 2895–2903. 118. Kovac A.L. (2006). Meta-analysis of the use of rescue antiemetics following PONV prophylactic failure with 5-HT3 antagonist/dexamethasone versus single-agent therapies. Annals of Pharmacotherapy 40, 873–887.

104 Cancer, care, and society 119. Leslie J.B., Gan T.J. Meta-analysis of the safety of 5HT3 antagonists with dexamethasone or droperidol for prevention of PONV (May). Annals of Pharmacotherapy 40, 856–872. 120. de Wit R., Herrstedt J., Rapoport B. et al. (2004). The oral NK1 antagonist, aprepitant, given with standard antiemetics provides protection against nausea and vomiting over multiple cycles of cisplatin based chemotherapy: a combined analysis of two randomised, placebo-controlled phase III clinical trials. European Journal of Cancer 40, 403–410. 121. Sharma R., Tobin P. and Clarke S.J. (2005). Management of chemotherapy-induced nausea, vomiting, oral mucositis, and diarrhoea. The Lancet Oncology 6, 93–102. 122. Worthington H., Clarkson J. and Eden O. (2006). Interventions for preventing oral mucositis for patients with cancer receiving treatment (Cochrane Review). The Cochrane Library, Issue 2. Oxford: Update Software. 123. Stiff P.J., Emmanouilides C., Bensinger W.I. et al. (2006). Palifermin reduces patient-reported mouth and throat soreness and improves patient functioning in the hematopoietic stem-cell transplantation setting. Journal of Clinical Oncology 24, 5186–5193. 124. Rothenberg M.L., Meropol N.J., Poplin E.A., Van Cutsem E. and Wadler S. (2001). Mortality associated with irinotecan plus bolus fluorouracil/leucovorin: summary findings of an independent panel. Journal of Clinical Oncology 19, 3801–3807. 125. Lee S.J., Schover L.R., Partridge A.H. et al. (2006). American Society of Clinical Oncology recommendations on fertility preservation in cancer patients. Journal of Clinical Oncology 24, 2917–2931, errata 5790. 126. Knobf M.T. (2006). Reproductive and hormonal sequelae of chemotherapy in women. Premature menopause and impaired fertility can result, effects that are especially disturbing to young women. American Journal of Nursing 106(3 suppl.), 60–65. 127. Schover L.R. (2005) Sexuality and fertility after cancer. Hematology 1, 523–527. 128. Lipshultz S.E., Rifai N., Dalton V.M. et al. (2004). The effect of dexrazoxane on myocardial injury in doxorubicin-treated children with acute lymphoblastic leukemia. New England Journal of Medicine 351, 145– 153. 129. Minotti G., Menna P., Salvatorelli E., Cairo G. and Gianni L. (2004). Anthracyclines: molecular advances and pharmacologic developments in antitumor activity and cardiotoxicity. Pharmacological Reviews 56, 185– 229. 130. Senkus-Konefka E. and Jassem J. (2006). Complications of breast-cancer radiotherapy. Clinical Oncology 18, 229–235.

131. Wouters K.A., Kremer L.C., Miller T.L., Herman E.H. and Lipshultz S.E. (2005). Protecting against anthracycline-induced myocardial damage: a review of the most promising strategies. British Journal of Haematology 131, 561–578. 132. Hjermstad M.J., Fossa S.D., Oldervoll L. et al. (2005). Fatigue in long-term Hodgkin’s disease survivors: a follow-up study. Journal of Clinical Oncology 23, 6587–6595. 133. Savard J., Simard S., Hervouet S. et al. (2005). Insomnia in men treated with radical prostatectomy for prostate cancer. Psycho-oncology 14, 147–156. 134. Jansen C.E., Miaskowski C., Dodd M., Dowling G. and Kramer J. (2005). A metaanalysis of studies of the effects of cancer chemotherapy on various domains of cognitive function. Cancer 104, 2222–2233. 135. Matsuda T., Takayama T., Tashiro M. et al. (2005). Mild cognitive impairment after adjuvant chemotherapy in breast cancer patients – evaluation of appropriate research design and methodology to measure symptoms. Breast Cancer 12, 279–287. 136. Phillips K.A. and Bernhard J. (2003). Adjuvant breast cancer treatment and cognitive function: current knowledge and research directions. Journal of the National Cancer Institute 95, 190–197. 137. Shahinian V.B., Kuo Y.F., Freeman J.L. and Goodwin J.S. (2006). Risk of the ‘androgen deprivation syndrome’ in men receiving androgen deprivation for prostate cancer. Archives of Internal Medicine 166, 465–471. 138. Shilling V., Jenkins V., Fallowfield L. and Howell T. (2003). The effects of hormone therapy on cognition in breast cancer. Journal of Steroid Biochemistry and Molecular Biology 86, 405–412. 139. National Cancer Institute Cancer Therapy Evaluation Program (NCI-CTEP). (2003). Common Terminology Criteria for Adverse Events v3.0 (CTCAE). Washington, DC: National Cancer Institute. 140. Koper P.C., Stroom J.C., van Putten W.L. et al. (1999). Acute morbidity reduction using 3DCRT for prostate carcinoma: a randomized study. International Journal of Radiation Oncology Biology Physics 43, 727–734. 141. van Tol-Geerdink J.J., Stalmeier P.F.M., Pasker-de Jong P.C.M. et al. (2006). Systematic review of the effect of radiation dose on tumor control and morbidity in the treatment of prostate cancer by 3DCRT. International Journal of Radiation Oncology Biology Physics 64, 534–543. 142. Zietman A.L., DeSilvio M.L., Slater J.D. et al. (2005). Comparison of conventional-dose vs high-dose conformal radiation therapy in clinically localized adenocarcinoma of the prostate: a randomized controlled trial.

Developments in the management of cancer

143.

144.

145.

146.

147.

148. 149.

150.

151.

152.

Journal of the American Medical Association 294, 1233–1239. Bentzen S.M. (2005). Theragnostic imaging for radiation oncology: dose-painting by numbers. The Lancet Oncology 6, 112–117. Webb S. (2005). Intensity-modulated radiation therapy (IMRT): a clinical reality for cancer treatment, ‘any fool can understand this’. The 2004 Silvanus Thompson Memorial Lecture. British Journal of Radiology 78, S64–72. Jaffray D.A. (2005). Emergent technologies for 3dimensional image-guided radiation delivery. Seminars in Radiation and Oncology 15, 208–216. Ling C.C., Yorke E. and Fuks Z. (2006). From IMRT to IGRT: frontierland or neverland? Radiotherapy and Oncology 78, 119–122. Jarritt P.H., Hounsell A.R., Carson K.J. et al. (2005). Use of combined PET/CT images for radiotherapy planning: initial experiences in lung cancer. British Journal of Radiology 28(suppl.), 33–40. Withers H.R. (1992). Biological basis of radiation therapy for cancer. Lancet 339, 156–159. Board of the Faculty of Clinical Oncology. (2006). Radiotherapy Dose-Fractionation. London: Royal College of Radiologists. Williams M.V., James N.D., Summers E.T., Barrett A. and Ash D.V. (2006). National survey of radiotherapy fractionation practice in 2003. Clinical Oncology 18, 3–14. Wyatt R.M., Beddoe A.H. and Dale R.G. (2003). The effects of delays in radiotherapy treatment on tumour control. Physics in Medicine and Biology 48, 139–155. Pignon J.P., Baujat B. and Bourhis J. (2005). Apport des meta-analyses sur données individuelles au

153.

154.

155.

156.

157.

158.

159.

160.

105

traitement des cancers ORL. Cancer/Radiotherapie 9, 31–36. Bonner J.A., Harari P.M., Giralt J. et al. (2006). Radiotherapy plus cetuximab for squamous-cell carcinoma of the head and neck. New England Journal of Medicine 354, 567–578. Allison R.R., Bagnato V.S., Cuenca R., Downie G.H. and Sibata C.H. (2006). The future of photodynamic therapy in oncology. Future Oncology 2, 53–71. Patrice T., Olivier D. and Bourre L. (2006). PDT in clinics: indications, results, and markets. Journal of Environmental Pathology, Toxicology and Oncology 25, 467–486. Berlinger N.T. (2006). Robotic surgery – squeezing into tight places. New England Journal of Medicine 354, 2099–2101. Enderling H., Anderson A.R., Chaplain M.A., Munro A.J. and Vaidya J.S. (2006). Mathematical modelling of radiotherapy strategies for early breast cancer. Journal of Theoretical Biology 241, 158–171. USC Department of Surgery. Intra-operative radiotherapy. Advanced Technology for the Treatment of Breast Cancer. www.targittial.com.whatistrgttrial.htm (accessed 24 July 2007). Andrews D.W., Scott C.B., Sperduto P.W. et al. (2004). Whole brain radiation therapy with or without stereotactic radiosurgery boost for patients with one to three brain metastases: Phase III results of the RTOG 9508 randomised trial. Lancet 363, 1665–1672. Bhatnagar A.K., Flickinger J.C., Kondziolka D. and Lunsford L.D. (2006). Stereotactic radiosurgery for four or more intracranial metastases. International Journal of Radiation Oncology, Biology, Physics 64, 898–903.

Part 2

The Experience of Cancer

108 The experience of cancer

Introduction Benner and Wrubel make an important point when they note that nursing and other caring practices have become paradoxical in a highly technical culture that seeks technological breakthroughs for all problems of illness.1 Taking the example of heart transplants as an important medical ‘breakthrough’, they remind us that: Few notice that the intensive medical and nursing follow-up – solving the day to day problems of living with a transplanted organ, treating sores in the mouth due to immunosuppression, coping with a new hormonal milieu, promptly recognising and responding to infection and rejection – were all caring ‘breakthroughs’ that led to the eventual success of heart transplantation. These essential day to day nursingcare issues had to be solved in order to make heart transplantation a viable therapy. Yet they are all overlooked in the scientific and popular media coverage of the transplant story [p.xv].

This book attempts to celebrate such caring practices in cancer care, while also providing insights into the areas where nurses need to direct their attention, and explore the demands and skills of caring practices, wherever they are found and whoever should practise them. Much has been written about the experience of cancer; it is also the focus of an ever-increasing body of research. This section sets out to explore this experience, and to pursue themes that may receive less attention: families and carers, professionals as well as lay people, who experience the disease through others. The theme is to explore in some detail an insider perspective (at least to the extent that one can get near to this) on what it is like to have cancer, and the problems and demands it brings, as well as the strategies people use to cope. The aim is to assist nurses to develop insight into what is needed in providing care. People with cancer do not experience their illness alone. The experience of those close to

them is of critical importance, for two reasons: first, because we know relatively little about the impact of cancer on relatives and friends, or for that matter on health professionals, and yet they are the most important sources of support for people with the disease. They will be responsible in many instances for a large proportion of the care and support that may be needed between episodes of formal treatment or institutional care. Cancer utterly disrupts people’s lives; likewise, it disrupts in equal measure the lives of those around them. Second, through their actions and reactions, those who are close to people with cancer, whether family members or friends, or health care professionals, determine the experience of cancer for the people who have the disease. This section provides insights into these issues and also explores what goes wrong in care, and the possible reasons behind our occasional inability to care. Thoughtful ideas around how nursing and nurses might take on a greater therapeutic role in the emotional lives of people affected by cancer are offered. Mary Wells begins this section with a detailed overview of the impact cancer has on people who are diagnosed as having cancer. Hilary Plant draws on her research and the accounts of people experiencing the impact of a family member or friend having cancer, to elucidate the experience of cancer within the family. In the concluding chapters Anne Lanceley begins to develop theory about nursing as a therapeutic endeavour in cancer care, the dynamics of therapeutic relationships in this context, and strategies and skills needed by nurses. She also exposes the barriers that exist for nurses working therapeutically; not the least of these is the sheer emotional burden that this imposes.

Reference 1. Benner P. and Wrubel J. (1988). The Primacy of Caring: Stress and Coping in Health and Illness. Menlo Park, CA: Addison-Wesley.

CHAPTER SIX

The impact of cancer Mary Wells

Navigating your way through cancer and its treatment is rather like being dropped in a strange city, without a map or compass. There are no landmarks that you recognise and no familiar features. This city has no signs, no one speaks your language and your requests for help are incomprehensible: they are unable to help you.1

A diagnosis of cancer is profoundly shocking not just for its immediate impact but because it represents, for most people, the loss of present familiarity and the loss of a sense of future. The words of a young woman with head and neck cancer (above) illustrate the overwhelming sense of being thrown into a completely different place and feeling completely lost. Although survival rates continue to increase, and advances in treatment and support offer considerable hope for improved quality of life, the impact of cancer still ‘hits you like a punch in the stomach’.2 Cancer changes lives, but the way in which it does so is as variable as the disease itself. The word ‘cancer’ is an all-encompassing label for more than 100 different types of cancer, many of which have very different manifestations, courses and consequences. As Frank states: There is no ‘right thing to say to a cancer patient’, because the ‘cancer patient’ as a generic entity does not exist. There are only persons who are different to start with, having different experiences according to the contingencies of their diseases.

The importance of recognising the person beneath the diagnosis cannot be over emphasised. It is impossible to generalise about the effects a cancer diagnosis, or its treatment and aftermath, may have on a person. The impact, for example, of mutilating surgery such as mastectomy for breast cancer, or the lingering concerns an individual with an early cancer of the larynx cured by radiotherapy may have, can vary considerably between individuals, and may not immediately reflect expectations by health carers. How the person defines themselves and what he or she does for a living also has a major influence. Consider, for example, the devastating impact that severe peripheral neuropathy as a result of vinca alkaloid chemotherapy might have on a professional violinist or furniture maker, as opposed to someone who does not use their hands to make a living. The apparent nature and stage of the cancer or the severity of treatment-related side effects is not always revealed by a person’s emotional reaction or apparent adjustment to living with the disease.3 The emotional impact of cancer will depend on a variety of factors, such as the experiences leading up to the communication of a diagnosis of cancer, the individual’s perception of cancer and its meaning, the disruption the disease and treatment causes to normal life, perceptions surrounding treatment and its effects, experiences of past traumatic events, and individual personality and coping styles.4,5

110 The experience of cancer

This chapter explores the ways in which cancer changes and influences the lives of those who are affected by the disease, and wherever possible, uses people’s own words to describe the impact of living with cancer.

The context of cancer The word cancer precipitates strong emotional reactions, including fear, despair, deep shock and sometimes secrecy. Historically, cancer has been associated with contagion, suffering, pain, and death.6–8 For many these associations are deeply embedded and, despite evidence for both improved survival and better quality of life through advances in treatment and symptom control, there remains a common perception that a diagnosis of cancer means certain death. Benner and Wrubel propose that in order to overcome the negativity that cancer engenders, there is a need for wholesale cultural redefinition of the disease, so that it is understood instead as a chronic or potentially curable disease.9 Although cancer shares similarities with other chronic diseases, Tritter argues that the chronic illness label is not useful.10 He suggests that cancer is different from other chronic illnesses in a number of ways, including its complexity and variety, its strong

Symptoms Screening Chance finding

GP/hospital review

association with death and its high profile in the media. Little also questions the appropriateness of conceptualising cancer as a chronic illness.11 He suggests that people who survive cancer cannot be said to be suffering from a chronic illness, but that ‘the suffering caused by confrontation with one’s own death, by the threat of recurrence, by disruption in close relationships, the physical disabilities brought about by treatment, and encounters with implicit and explicit discrimination, is real and present, and it may be chronic’ (p.202). There is no doubt that the experience of having cancer causes ambiguity and disruption in many areas of life, and that this may never be completely resolved, even when a person is ‘cured’. Cancer rarely takes a linear or predictable course from diagnosis to treatment, cure or death. More often cancer and its treatment produce episodes of acute illness and treatment with periods of relative health and normality. However, there are a number of particularly difficult points in a person’s experience of cancer, including waiting for diagnosis, receiving the diagnosis, going through treatment, and trying to get back to normal.12 The cancer trajectory as shown in Figure 6.1 is an over-simplification of the journey experienced by people with cancer, as it implies a progression through a number of discrete stages. Although it is a useful framework for

Investigations

Diagnosis

Palliative treatment

Radical treatment

Rehabilitation and supportive care

Death

Recurrence

Figure 6.1

The cancer trajectory.

Disease-free survival

The impact of cancer 111

distance from treatment centre

work and social life

emotional disruption

sexuality

prognosis

stage in life

death and dying views about causation

family and friends

home situation

loss

hormone therapy

fertility

guilt body image previous treatment

surgery

financial situation knowledge and understanding chemotherapy

delay

disfigurement relationships with health care professionals

future treatment rehabilitation

physical and functional disruption

symptoms waiting

sadness shock and fear

Figure 6.2

ambiguity

The context of the cancer experience.

considering the critical phases of the journey, it de-contextualises these important stages. At any stage, or indeed at every stage, the context in which the person experiences investigations, hospital appointments, treatment or supportive care is completely individual. Figure 6.2 illustrates just some of the many feelings, emotions, concerns and contextual influences that may have an impact on the individual’s experience.

Diagnosis Diagnosis is rarely the real beginning of the disease, as the cancer may have taken months or even years to develop before a diagnosis is actually triggered. However, it is the point at which cancer becomes a reality, and therefore represents an appropriate place to start. The shock of receiving a cancer diagnosis can be overwhelming, and although most people express acute distress and fear at the news, many also experience profound feelings of disbelief or even outright denial. The accounts below illustrate some of these reactions. The first is an extract

from an interview with a 71-year-old man diagnosed with carcinoma of the larynx. When he told me I’d got cancer – he bloody frightened me to death, he did. I went out, didn’t I, went out cold . . . frightened me to death . . . I remember going down, sitting down and thinking that was it.13

Many people describe the feeling of almost being displaced from themselves, as if they are watching someone on stage or television that isn’t really them. As this 48-year-old woman with carcinoma of the tongue explained, there is a sense of unreality about being told of a cancer diagnosis and it can be extremely difficult to take it all in. The first thing he more or less said was, ‘I don’t beat about the bush’, he said ‘what you’ve got, you’ve got a cancer,’ and that’s when it sort of hit me, because you’re sort of mesmerised really, you sort of go into space, you think he can’t be talking about me, he’s probably wrong, he must be talking about someone else, but he said ‘you have’, he said ‘you’ve got a cancer’. I think that was the worst time, because you come out of there thinking no, he’s got it all wrong, he’s got me muddled with somebody else.13

112 The experience of cancer

Communicating a diagnosis of cancer Despite the immense shock of receiving a diagnosis of cancer, almost all patients remember how their diagnosis was communicated. A recent qualitative study explored patients’ and families’ experiences and wishes of being told about their cancer, and found that the way in which information is shared was as important as the content of the communication. Six attributes held by health professionals were identified as most important:14 • playing it straight (being honest and direct) • making it clear (using language that can be understood) • showing you care • giving time • pacing information (appreciating the importance of timing, understanding and readiness to receive information at different stages) • staying the course (communicating a sense of being there for the person now and in the future, whether or not the cancer progresses). When health care professionals did not demonstrate these attributes, patients were generally dissatisfied with the way in which information was disclosed. In terms of what they wanted to be told, patients showed that the two most important areas were information about prognosis and the provision of hopeful messages. Although patients wanted accurate information about what was likely to happen in the future, they also wanted to be able to maintain hope. Sometimes this involved ‘living parallel realities’ in which they acknowledged that the cancer was terminal but still hoped for a cure. Health professionals could maintain hope in a number of ways, including ‘leaving the door open’ for a more hopeful outcome, being honest about difficult subjects, presenting sensitive and timely information about palliative care, respecting patients’ wishes to pursue alternative treatments, and being sensitive to changing information needs. Communicating a diagnosis of cancer is difficult for health professionals as well as for the person who is receiving the news. Frequently the diagnosis of cancer is communicated in a busy outpatient clinic

where time and space is limited. Patients often feel that they were too shocked or upset to know what to ask at the time, which adds to the distress and uncertainty felt between hospital appointments. Specialist nurses often play an important role during these periods, and it is important that they make it clear to patients that they are available to talk. Models of ‘breaking bad news’ provide a useful framework for discussing difficult emotional issues as well as imparting actual news. Box 6.1 outlines the S-P-I-K-E-S strategy, which emphasises the importance of attention to the setting, content and portrayal of information.15

Information Providing information at all stages of the cancer trajectory is recognised as extremely important, and there has been a rapid increase in the amount and variety of information available to patients with cancer in recent years. The worldwide web has made it possible for most people to access high-quality information about cancer as well as inaccurate or biased information, which is often aimed at persuading vulnerable people to spend money on alternative or commercial products with no proven benefit. Clearly there are many huge advantages to the immediate availability of reliable information, such as that produced by Cancerbackup (www.cancerbackup.org.uk), but many patients are overwhelmed by the range and amount of information available, not knowing what to read and how to interpret it. The possibility of an ‘inverse information law’ also exists, whereby the people who most need information are least likely to have access to new technologies.16 Additionally, studies show that the majority of patients still prefer to interact with health care professionals rather than use a computer or receive a booklet.17 A large UK survey of more than 2000 patients found that 87% preferred to be given as much information as possible, whether good or bad.18 Other studies have revealed that certain groups of patients are more likely to be provided with information, including those with breast cancer,17,19 and those who are more affluent.20 These worrying findings suggest that the inverse information law applies across the board, and that people from

The impact of cancer 113

Box 6.1 Discussing difficult news or emotional issues: The S-P-I-K-E-S strategy • Setting (S): – privacy – create a sense of privacy and minimise disruptions as far as possible – involve significant others – appointing a ‘spokesperson’ may be helpful. Be aware of family situation and relationships – sit down – communicate a sense of partnership – look attentive and calm – maintain eye contact as much as possible but break off momentarily if the person is upset, so as to reduce intensity – listening mode – allow silence, do not interrupt, repeat important words, acknowledge what is said – availability – communicate any time restraints, reduce possible interruptions. • Perception (P) – ask what the person thinks, feels and expects before you tell them. Check what they have been told and what they understand. • Invitation (I) – ask what the person wants to know and when they want to know it. • Knowledge (K) – provide some warning that you are going to talk about something difficult so that the person has a few more seconds to prepare. Avoid technical language and where possible use terms that the person themselves has used, providing information in small chunks. Be honest but do not destroy hope. • Empathy (E): – listen for and identify emotions being expressed, and if emotions are not being expressed, ask how the person feels about what has been said – identify the cause of the emotion(s) – show the person that you have made a connection between the cause (e.g. the diagnosis) and the emotion itself (e.g. profound shock) – validate the person’s feelings by communicating to them that their emotions are understandable, normal and valid. • Strategy and summary (S) – check intermittently that the person understands the information and that you are communicating about the same thing. At the end of the discussion summarise what has been said and ensure that a clear plan of action or future contact is communicated. Adapted from Buckman (2005).15

deprived backgrounds who are more likely to have poor-prognosis cancers such as lung cancer may be systematically disadvantaged. However, it must be recognised that people differ enormously in their preferences for information, including the nature, timing and amount with which they feel comfortable. As Leydon and coworkers point out, people ‘oscillate between the desire for information and the avoidance of new information’ (p.912).21 This qualitative study of 24 patients with varying diagnoses identified the themes of faith, hope and charity to explain patients’ attitude to gaining and using information. Patients had faith in medical staff and often settled for the information they were given, feeling that asking for more might be frightening, confusing or frowned upon. Several patients felt that seeking further information could undermine their efforts to maintain hope, get on with life and be positive. Many were very aware of other people who were worse off or more deserving, and this often influ-

enced how much they sought information or approached busy staff whose time might be needed by others (charity).

Individual beliefs about cancer and its causation It is normal to want to understand a disease or symptom that has such a profound impact on your life, and it can be deeply troubling if there is no explanation for it. Although some people find it helpful to be able to attribute their disease to a particular cause (e.g. mesothelioma and exposure to asbestos or lung cancer and smoking), such attributions can also foster bitterness, guilt, anger and regret. Where there is no obvious source of blame, many people still spend a great deal of time searching for meaning, motivated by a strong desire to make sense of the situation. This search may help the person to adapt and regain control,

114 The experience of cancer

and it may occur at any stage. Taylor has devised a conceptual framework for the search for meaning, which includes four key components:22 • identifying causal explanations, which may change over time and differ according to cultural background • selective incidence – asking questions such as ‘Why did this happen to me and not someone else?’ • responsibility – considering who or what is to blame? If a person perceives that they can modify their behaviour or lifestyle to reduce their susceptibility to recurrence they may feel more in control than if they feel that inherent personality factors are to blame23 • significance of the experience – some individuals construe benefits from their cancer. Individuals will respond in different ways to this search, showing resignation (passive acceptance), remonstration (lack of acceptance and discontent), or reconciliation (significance found and accepted). A phenomenological view of adjustment and cancer emphasises the inextricable link between the meaning and context of the illness experience and the person’s ability to cope with the disease.9 The individual construction of meaning is to a large extent dependent on personal beliefs, characteristics, and events, past and present.5,24 The sociological and anthropological literature identifies that the meaning of illness is attributed as a result of socially determined cultural interpretations and networks, and that an individual’s own interpretation and explanation for illness and its symptoms are highly significant to the ‘legitimisation’ of disease.25–28 The acceptance of someone’s ‘popular’ explanation is important, as it ‘permits patients to satisfactorily integrate their illness in a context where the need for coherence in the face of a break with life is essential’.29 Assigning meaning to illness helps to reduce or even resolve suffering.24 Nurses can greatly assist with the process of finding meaning, by letting an individual tell their own story surrounding their illness, and helping them place this in context, thus reinforcing and showing acceptance of their feelings and explanations. This ‘illness narrative’

has been recognised as an important means by which understanding of the meaning of illness can be developed by an individual, and may be of enormous therapeutic value (see Care strategy 6.1).25,30–32

The situation in which the diagnosis occurs An individual’s reaction to a diagnosis of cancer is to some extent dependent on the way in which the disease presents itself and is first acknowledged. Significant factors include whether or not the person suspected they had cancer, expects to be told they have cancer, or experiences a delay in diagnosis. The advent of ‘one-stop’ clinics for patients with common cancers such as breast cancer has streamlined the process of diagnosis and has significantly reduced waiting times for results and treatment. Although there are clearly many advantages to receiving a quick diagnosis, it can be particularly shocking for people who did not expect to be told they have cancer. Where cancer has been detected through a routine screening test with little prior counselling, there may have been no time to consider the possibility that anything serious is wrong. Patients have often described turning up for an outpatient appointment alone because they had no idea they would be given such devastating news. Others who have suspected cancer for some time may be relieved to find out their diagnosis, since it ends some of the uncertainty. The example below illustrates this: He took a sample and after a week I had an appointment with him again, and then he told me it was malignant, that is was cancer. And to tell you the truth, I was very comfortable with it. He told me exactly how it was. And he told me how it was progressing and even if this is a disease that people don’t like very much, I was very content to finally know what was wrong with me. Having been like this for a few years, I was always getting lower and lower. I was worse and worse all the time. I almost cheered up just to know what it was . . . You have been fighting some ghost that you don’t know what it is, nothing. That was absolutely the worst thing about the whole thing.35

The impact of cancer 115

Care strategy 6.1

Facilitating narratives

Facilitating the process in which someone can ‘tell their story’ acknowledges who they are as a person, and values their interpretation of how their identity has been disrupted as a result of cancer. The construction of such a narrative enables the individual to make sense of what is happening, as well as to incorporate their illness into the context of their life in its wider sense. This can help enormously to ‘normalise’ their experience. Time, space and privacy are essential. Being sensitive to metaphors, stories about apparently unrelated events in people’s lives, jokes, and ‘throw away’ remarks is also very important. Some people will find it much easier to express difficult emotions through humour or a story about something they did before they were diagnosed, therefore it is vital that nurses listen carefully to such cues. Others will talk directly about ‘how it all started’ without needing encouragement. However, asking about the following aspects of the experience may assist the expression of a narrative or story: • describing what happened around the time of the diagnosis, and their thoughts and feelings • describing how things have changed since the diagnosis – friends, family, work, relationships, roles – for better and for worse • what the treatment and its effects have been like • what ‘normal’ life is like now • how they feel they have changed since the diagnosis • how they make sense of the cancer and whether they think there are any explanations • what is most important in life now • how they see the future • what has been the most significant change in their life as a result of the diagnosis. Clearly this is not a list of direct questions, but a series of potential areas of discussion. Some people may find it easier to express themselves using art, photographs or writing, and it may be possible to encourage them to tell their story using these mediums, even if they find it difficult to talk. Hearing other people’s stories can also be beneficial. In a questionnaire study, Chelf et al. found that 85% of people who attended a storytelling workshop gained hope from hearing others’ stories of living with cancer.33 Time to ‘debrief ’ is important, as retelling many aspects of the narrative may provoke feelings and reactions that require support within the safety of the therapeutic relationship. As Atwood describes,34 the story may only make sense afterwards, and there needs to be time to reflect on its meaning: When you are in the middle of a story it isn’t a story at all, but only a confusion; a dark roaring, a blindness, a wreckage of shattered glass and splintered wood; like a house in a whirlwind, or else a boat crushed by the icebergs or swept over the rapids, and all aboard powerless to stop it. It’s only afterwards that it becomes anything like a story at all. When you are telling it, to yourself or to someone else [p.346].

Delays in diagnosis can have a significant impact on outcome, therefore it is not surprising that they often evoke feelings of anger, guilt and blame. The nature and length of the delay may colour an individual’s reactions to the diagnosis and his or her ability to cope and adjust. Reasons for delay are often multifactorial and can include failure by a general practitioner or other health professional to recognise symptoms suggestive of cancer, difficulties in detecting the cancer using routine diagnostic procedures, and delays on the part of the patient. In recent years, considerable resource has been directed towards improvements in referral and diagnosis but we also need to

understand more about the delays that are effectively caused by patients themselves due to fear, stigma, denial, guilt, and not taking symptoms seriously. A qualitative study of patients with lung cancer revealed that contrary to the widely held view that lung cancer is silent until far advanced, patients experienced symptoms for many months before their diagnosis but tended not to attribute these to serious illness.36 It appeared that those who smoked felt undeserving of medical care and expected to be treated less promptly. One of the problems in diagnosing cancer promptly and accurately is that cancer is essentially a disease of older people who already have

116 The experience of cancer

concomitant disease, therefore symptoms may be masked or interpreted wrongly.37 Lack of awareness of the likelihood of cancer, and delay in seeking help are common in older people. Edlund and Sneed studied the attitudes and reactions of 133 people of all ages, newly diagnosed with cancer, and found that people over the age of 70 years were significantly less positive about the outcome of their disease, believing that nothing could be done.38 However, they were also significantly less psychologically distressed than other age groups. This may be because older people are more resigned to the idea of illness and death than younger people, or it may reflect the attitude of society and the health care system to the elderly; since they are no longer economically useful, older people may have a sense of time having run out. For those who have delayed seeking help for signs of cancer, guilt and self-reproach may complicate acceptance of treatment, and psychological recovery.39 Paradoxically, fear of criticism by doctors and health professionals may play a part in extending delay. Family members may also feel responsible for not acting sooner, or may be frustrated in being unable to convince someone to visit their doctor. For some, a conscious decision is taken not to seek treatment, and these people may delay their diagnosis until it becomes impossible to manage their symptoms, or until they need emergency care. Reasons for delaying diagnosis include family responsibilities such as being the main carer for someone else, and personal issues such as fear, embarrassment, stigma, and ignorance. Some people find it more and more difficult as time goes on to admit that something is wrong. It is not uncommon for an obvious cancer to be hidden from a partner for months or years, undressing in the dark and making other excuses for odour arising from the tumour. Fungating tumours in intimate places such as the breast, anus, vulva or penis, for example, may cause embarrassment, and therefore delay in seeking help for them. A mixture of guilt and relief may result when finally ‘found out’. As a professional carer it is sometimes hard to understand how someone could hide a cancer for so long, particularly when, in the case of a fungating wound, it is manifestly malodourous, weeping,

raw and often extensive. Feelings of self-disgust, fear of rejection, judgement and blame, or anticipating punishment may be commonly experienced.40 A supportive and non-judgemental approach is important in caring for such individuals, as the expectation of further rejection can be very powerful. Attributing personal responsibility onto illness can lead to feelings of guilt, self-blame, and shame.41 Guilt and isolation can be felt because of a belief that cancer is a result of past wrongdoing or sinful behaviour, and cancer can be perceived as a ‘punishment’ and therefore deserved in some way. For example, lung cancer in someone who has smoked heavily can be accompanied by feelings of guilt and self-reproach; these may also be reinforced by unsympathetic health professionals. Guilt may also, however, be a means by which some individuals define themselves in order to preserve feelings of being in control. In this way guilt may permit protection from other more difficult emotions engendered by life-threatening illness.42 Sontag argues that recent psychological theories associating cancer with personality type may result in people feeling culpable for it.8 In addition, media attention surrounding prevention through diet and self-examination has encouraged notions of blame and fault in those who develop the disease. This is exaggerated by a health care culture that promotes a non-judgemental attitude towards consumers of care, yet at the same time strongly emphasises individual responsibility for health and illness. Thus, the health care system can simultaneously relieve and reinstate guilt.

Individual personality and coping style There has been considerable controversy about the extent to which an individual’s personality and coping style actually affect their outcome, but it is widely acknowledged that different coping styles do exist and that individuals display a number of different reactions to their diagnosis. The expanding field of ‘psycho-oncology’ has provided a large number of different theories of adjustment and adaptation to cancer and its

The impact of cancer 117

treatment. While it is impossible to generalise about an individual’s reaction to cancer, these theories may be useful in the recognition of common reactions and the facilitation of emotional expression. A number of the theories highlight stages that an individual may pass through in adjusting to the news of a diagnosis of cancer.43,44 These include shock, numbness, and disbelief, lasting for days to weeks; acute distress, which may manifest itself as anger or anxiety, lasting for weeks to months; depression, or despair, and gradual acceptance, which may take several months or even years. While these theories are useful, they are also problematic in that they suggest that such emotional reactions are universally experienced and that progression through such stages of adjustment is serial and occurs in a forward direction, thus portraying an overly constrained notion of what is ‘normal’ and ‘healthy’ adjustment. The work of Greer et al. has been extremely influential in our understanding of patients’ adjustment to cancer.45 These authors interviewed 69 women with breast cancer and identified five distinct adjustment styles: • • • • •

fighting spirit avoidance and denial fatalism anxious preoccupation helplessness and hopelessness.

A person who adopts a fighting spirit towards her cancer may perceive the threat of cancer as a challenge that she is determined to overcome, expressing this with the following kinds of response: ‘I’m not giving up’, ‘This is not going to get me’, ‘I’m going to fight it’. Someone who avoids or denies their disease may have an equally strong response, ignoring the fact that it is anything to do with them. Those who feel fatalistic, helpless, hopeless or excessively anxious are less able to take control of the situation and may be more overwhelmed by the diagnosis. How far health professionals should collude with or refute an attitude of denial is not straightforward. On balance it is considered unwise and possibly harmful to attempt forcefully to break through a patient’s denial; however, to collude

and encourage such denial might be equally harmful. Over-zealous health care professionals can insist on truth telling at times when a patient is not ready or able to deal with the impact of what they are being told. Careful and sensitive discussion in a safe, therapeutic relationship will often provide an opening for such dialogue, without removing the ability for the person to hold on to control of the situation. Those who are fatalistic about their disease, and do not believe they have any control, may express this through passive acceptance: ‘You can’t do anything and if you can’t do anything about it there’s no point worrying about it, so you have to make the best of it . . . I think you might as well make the best of it, otherwise you give up and get worried about it, no point in doing that’.13 Comments such as ‘You are the expert’ or ‘I’m in your hands’ may frequently be said to doctors or nurses, by individuals who feel safer leaving any decisions to their professional carers. This passive attitude may make it difficult for the person to access help or believe in their ability to influence the course of events, but it may also protect against the sometimes overwhelming burden of having cancer. There are probably times in most people’s illness when placing responsibility and trust in others is an essential part of maintaining psychological stability. As one man said, ‘when you’re not feeling well you don’t feel very safe, you just want somebody to make it go away’.13 Anxious preoccupation is a term used to describe someone who finds it difficult to think of anything other than their illness and looks for constant reassurance. They may seek alternative medicine or excessive amounts of information, worrying that every symptom is a sign of recurrent disease: ‘I don’t know what is going on . . . am I OK or am I not . . . I go over and over it in my mind’.13 These adjustment styles are not necessarily pathological or negative, although they might indicate anxiety or depression, which could warrant psychological intervention. Many people will alternate between a variety of reactions to their situation, while others remain positive and in control throughout their illness. Someone who has ‘given up’ and is overwhelmed by the cancer and cannot see any way out may be said to have adopted a ‘helpless/

118 The experience of cancer

hopeless’ adjustment style. This particular response has been most strongly linked with a poor outlook. Greer et al. followed their sample of women with breast cancer over a 15-year period and found that the responses of fighting spirit and denial were positively associated with longer survival, and that the helpless/hopeless response was correlated with a poorer outcome.45–47 Although the study provoked considerable interest in the relationship between cancer and the mind, the idea that a single coping style is possible to identify and that this is stable and durable over time is problematic. The original study also neglected the possible influence of other factors including prognostic indicators, support and subsequent life events. A larger and more recent cohort study, which did control for known prognostic factors, confirmed that a helpless/hopeless outlook still exerted a significantly detrimental effect on disease-free survival, although no sustained link between fighting spirit and improved survival was found.48 Despite such individually convincing findings, a recent systematic review concluded that there is little overall evidence to support an association between coping style and survival from cancer.49 Petticrew et al. also suggest that the tendency to associate certain coping styles with improved survival has led to a pressure on patients to cope in a certain way, thus adding to their psychological burden.49 Feelings of anger, anxiety, sadness and despondency are entirely appropriate responses to a life-threatening event, such as a diagnosis of cancer, and these emotions are unlikely to go away completely unless the threat of the disease is also removed. However, when these feelings persist and are overwhelming they can become damaging. It is estimated that about one-third of people with cancer suffer from clinically significant anxiety and depression.50

Adjustment to cancer Brennan argues that coping theories do not go far enough in explaining the way in which a person adapts over time to having cancer.51 How well an individual adjusts to a life-threatening illness such as cancer is thought to depend largely on the way in which they appraise the ‘catastrophic threat’

imposed by the diagnosis. How the person perceives the magnitude and consequences of the threat, and how far he or she feels able to control that threat may be influential,52 as it appears that individuals who are active rather than passive in their response to cancer may adjust more successfully. The concept of self-efficacy,53 defined as belief in one’s own ability to influence events or master challenges,54 is relevant here. Bandura’s model suggests that an individual’s sense of selfefficacy is strengthened by four main sources of influence as shown in Box 6.2.55

Box 6.2

Key influences on self-efficacy

1. Experiencing success – when a person achieves something that is important to them despite having some setbacks, their belief in their own ability to get through difficult times is likely to be strengthened. 2. Vicarious experience through social role models – seeing other people succeed is encouraging, particularly when their situations are similar. Interestingly, Bandura does not discuss the potential benefits of comparing one’s situation with someone who appears to be ‘worse off’, although many people with cancer talk about the sobering effect that this has in helping to put their situation into perspective. Neither does Bandura raise the issue that vicarious experience through the media can sometimes be unhelpful. Although some patients gain considerable motivation from media stories about people who have survived cancer against all the odds, or achieved remarkable success despite having terminal disease, others can find such stories discouraging if they perceive themselves as having failed because they have not been able to match up. 3. Social persuasion – self-efficacy can be strengthened through an encouraging relationship, e.g. with a health professional. Acknowledging a person’s achievements and strengths and encouraging them to believe in themselves is a key component of this relationship. In addition, the ‘persuader’ can help to structure and facilitate situations in which the person is likely to feel successful and unlikely to feel they have failed. 4. Reduction in stress reactions and negative thought processes – the experience of anxiety, tension and physical symptoms can all signify to a person that he or she is ill or not coping with the situation. Strategies that help to reduce stress reactions and/or challenge negative thoughts can be very helpful in improving the person’s sense of self-efficacy.

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The way in which a person appraises the magnitude or consequences of the threat of cancer may depend on their perception of the timeline of their cancer. Studies show that patients who conceptualise their cancer as a chronic illness are more anxious, depressed, and worried about recurrence than those who perceive their disease as acute and short-lived.56 Other situational factors are also influential, including expectations about prognosis, physical health, emotional and social support, ability to find benefit in the situation, and previous mental health and life experiences. Psychodynamic theorists believe that early developmental processes influence personality resources and thus the defence mechanisms employed in adjusting to life with cancer. When faced with the loss of control and threat of dependence imposed by cancer, attempts at retaining control are unconsciously made through enacting defences learned in childhood. Common defence mechanisms include: • denial • projection – attributing own unacknowledged feelings onto someone else • displacement – redirecting energy into something other than the cause of the distress • sublimation – channelling primitive emotions into something creative, for example anger or art • regression – return to childlike behaviour • intellectualisation – at the expense of emotional expression • conversion – expression of emotional anxiety through a physical symptom.4 Most nurses will recognise at least some of these defence mechanisms as common manifestations of patients’ emotional responses to cancer. Psychodynamic theorists believe that these defences help to protect against unbearable anxiety and that it is therefore important not to destroy them. It has been suggested that nurses have a crucial role in containing and holding this unbearable anxiety in order to make it feel more manageable for the person with cancer.57 If someone has experienced previous traumatic events in their life that are unresolved in some way, it is probably more likely that they will have

difficulty dealing with the reality of having cancer.58 Often, the emotional response evokes memories of difficult past experiences, for instance childhood sexual abuse, and this can lead to negative ways of behaving.59 A study of holocaust survivors with cancer found that compared with others who had not experienced a traumatic life event, the holocaust survivors had significantly higher psychological distress scores.60 Identifying patients who are at high risk of experiencing real difficulties in adjusting to a diagnosis of cancer is clearly important. However, this is not straightforward, as oncology staff are known to be poor at identifying psychological distress,61 and patients themselves may perceive that they do not need help or that there is nothing that can be done to help anyway.62 Screening patients for psychological distress using validated assessment tools such as the hospital anxiety and depression scale (HADS),63 or the Mental Adjustment to Cancer questionnaire,64 may be helpful, provided that adequate psychological support is available. Unfortunately few oncology departments have sufficient access to psychological services, although the growth in information and support facilities such as Maggie’s Centres (www.maggiescentres.org.uk) has enabled many more people to benefit from skilled psychological support. Emotional support,65 defined as ‘spending time with another person, listening and talking about problems and concerns in a way that is helpful and reassuring’ (p.1275) is clearly extremely important. However, the findings of a questionnaire study of 431 patients from seven different outpatient clinics raise serious questions about whether or not nurses are seen to fulfil this need.65 Patients were given a list including doctors, family/friends, nurses, information resources, and support groups, and were asked to indicate the most important overall sources of emotional support. Senior doctors were rated as most important, followed by friends and family. Nurses were chosen by less than 10% of respondents. In recent years, there has been a growing interest in the potential for psychological interventions to enhance emotional well-being, quality of life and even survival, but consistent evidence for the effectiveness of such interventions is limited. One systematic review concluded that only tentative

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recommendations could be offered for and against most intervention strategies.66 Some evidence of medium- and long-term benefits from group therapy, education, counselling, relaxation, and cognitive-behavioural therapy was found but the results were not overwhelmingly positive. Another systematic review recommended that behaviour therapy is beneficial for people with advanced cancer.67 However, there are a number of real difficulties with evaluating psychological interventions, with systematic reviews in this area being especially problematic (see Box 6.3).68 Although more objective evidence for the effectiveness of psychological interventions is required, there is no doubt that many patients benefit from learning strategies that enable them to manage the stress and disruption caused by cancer. Probably one of the most commonly used approaches is the use of adjuvant psychological therapy (APT),52 in

Box 6.3 Difficulties in conducting systematic reviews of psychological interventions • Heterogeneity of psychological interventions, e.g. group therapy facilitated by a trained therapist, individual counselling and self-help cognitive therapy are all very different. • Publication bias may exist, with negative studies less likely to be published.49 • Quality of studies is variable – many are small, do not adjust for important predictors of survival, and have short follow-up periods, therefore give no information about long-term effects. • Criteria used to assess the quality of studies may be inappropriate for psychological interventions. • Outcome measures are variable – difficult to compare outcomes on several different scales. • Randomised controlled trials may not be the best way of assessing psychological interventions and trials need to be comprehensively planned using a framework such as the Medical Research Council (MRC) framework for the evaluation of complex interventions.69 • Measuring overall coping styles and applying blanket findings to individual patients is problematic, due to the fact that patients’ emotional responses are not usually linear or static. • There are more studies of women with breast cancer than any other cancer, therefore it is difficult to apply findings universally.

which therapy is orientated towards problem solving, reappraisal and ‘cognitive restructuring’ (reality testing). The components of this structured approach include the following: • enabling the patient to air their feelings • teaching behavioural techniques such as relaxation, distraction, and activity scheduling, to maximise the patient’s sense of control and ability to feel pleasure during daily life • the use of cognitive techniques, which assist the patient to recognise any automatic or negative thoughts and learn to challenge them. The patient is helped to consider the evidence for any negative fears and to search for more constructive or alternative explanations. A process of ‘decatastrophising’ encourages the patient to confront their fears in a safe environment and to consider whether these are realistic. Simple distraction techniques that ‘break into the spiral of increasing anxiety’ (p.117) can be useful.52 Patients can also be taught to say certain positive things to themselves whenever they feel anxious or have negative thoughts • working with couples – partners can be effectively involved in this process by reminding the patient of their strengths, remembering previous ways that the couple have coped with stressful events. While working with the couple, the therapist can facilitate and enhance their communication skills through the use of behavioural and cognitive techniques. This approach is essentially a joint problemsolving exercise, which is flexible enough to be tailored to an individual’s needs. The application of these techniques can help to develop more constructive coping strategies, which can positively change the ways of responding and adjusting to living with cancer. Frank is critical of the emphasis in the psychooncology literature on adjustment, and suggests that people also need to mourn in order to move on:3 I want to emphasise mourning as affirmation. To mourn what has passed, either through illness or death, affirms the life that has been led. To adjust too rapidly is to treat the loss simply as an incident from which

The impact of cancer 121 one can bounce back; it devalues whom or what has been lost. When an ill person loses the body in which she has lived, or when a caregiver suffers the death of the person he has cared for, the loss must be mourned fully in its own time. Only through mourning can we find a life on the other side of loss [p.40].

Loss The impact of cancer is largely felt through the losses experienced by the individual and family. Loss is felt in every aspect of life, perhaps most profoundly in terms of the loss of a sense of future. People often feel they cannot make plans, cannot allow themselves to have expectations or hopes for the future in case something goes wrong. The loss of a sense of self is often deeply felt. The experience of being diagnosed with cancer seems to undermine a person’s sense of who they are at a very fundamental level. In particular, people often lose a sense of being able to influence, control, or even engage in aspects of life which they have taken for granted – work, family relationships, home and social roles, sex, sport and leisure activities, eating and drinking, bodily functions, and appearance. As John Diamond so poignantly described:70 When I told people that I was not quite myself I meant it almost literally: in the mirror I was somebody else. Precisely I was a little old man whom I imagine to be called Albert or Norman or George [p.191].

Another important dimension of loss is that of time, as life is largely taken over by the ‘waiting culture of medicine’.71 Imposed absence from work and home, attending hospital for clinic appointments and treatment, and waiting for results, all contribute to the loss of one’s own routine, sense of time, and control over that time. The centralisation of services may make this worse, as people suffer the practical, physical, and psychosocial burden of travelling long distances for their treatment.72 Loss is often compounded by physical change. In a study of the experience of cancer of the head and neck, feelings of being embarrassed to go out showing any visible signs of cancer or its treatment, being embarrassed to eat in a restaurant for

fear of dribbling or needing to use a straw were reported.13 Several of those interviewed explained how they held back from normal activities, preferring to do nothing, rather than be disappointed if they found they were unable to do what they had planned. Cancer and its treatment had knocked their confidence and caused withdrawal from many of the aspects of life that gave them their individuality, such as gardening, work, church, swimming, and going out socially. Withdrawal from these activities meant that these people experienced a loss of identity and loss of belonging. The following are excerpts from interviews with people following treatment for cancer of the head and neck. I dribble at the corner of my mouth and this upsets me, I’ve never got full control, the whole thing makes me feel as if I’m not functioning properly . . . I don’t want to get into one to these things and then not be able to do it properly. I didn’t want anyone asking me uncomfortable questions at the time . . . I felt I couldn’t go out, people I knew I’d see and I didn’t want to have to explain, that sort of thing. Didn’t go to church – didn’t want people surreptitiously looking at my burns.13

Life is disrupted by emotional, physical, and practical factors, which may include repeated hospital appointments for treatment or follow-up, the need for specialist clothing or food as a result of cancer surgery, or inability to work or care for children due to treatment side-effects. However, such disruption requires a re-evaluation of life in order to move towards wellness. This re-examination of life may be an enriching experience, resulting in a shift in self-image and perspective. Many people describe positive changes in their lives including closer relationships, changes in priorities, an enhanced sense of purpose, greater spirituality, and improved personal resources.73 One model of adjustment, which recognises that adapting to a cancer diagnosis is a dynamic process in which individuals struggle to make sense of changes imposed by the disease and its treatment and often manage to achieve some positive change, is the social–cognitive transition model of adjustment (SCT).51 Brennan proposes

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that individuals hold a number of fundamental assumptions about themselves and the world, which are socially constructed and life-stage dependent. His model recognises that the way in which people respond to a diagnosis of cancer depends on three key factors: • their ‘assumptive world’ – developed from their own life experiences about how the world functions. These assumptions are continuously revised as a person is challenged by life events • the social context in which they experience cancer – gender, social class, culture and race, family, support, health care system • the way in which they respond to information which is incompatible with their assumptions. For instance, people who have very rigid expectations or views about the future may find it more difficult to adapt to such a life-changing event and may be more vulnerable to prolonged post-traumatic stress symptoms. People adopt a number of different strategies in order to live with either the real or potential threat of cancer. Taylor believes that people create ‘illusions’ for themselves which help them to make sense of cancer, enhance self esteem and encourage them to feel in control.74 Some of these illusions may not be realistic, but provide a framework for understanding what is happening. Two recent studies of patients with advanced disease have revealed that only a minority acknowledge the incurability of their cancer.75,76 One of the studies found that patients who scored highly in terms of their need to control were more likely to believe their cancer was curable and were more likely to use alternative therapy.75 These findings suggest that patients reshape information in order to suit their own illusions. Evidence also exists that an individual may adapt their expectations of themselves, their lifestyle, or personal philosophy in order to cope with the disruption brought to life by cancer.77 A phenomenological study of patients with chronic illnesses including cancer, found that patients used some or all of the following strategies in order to deal with the challenges they faced in maintaining and promoting their own health:78

• creating a sense of purpose (for example, making the day worth something) • consciously attending to own attitude (for example, thinking positively, doing things for oneself) • drawing on personal and family ‘patterning’ (ways of coping) • setting and striving for goals • talking (to oneself and others) • allowing oneself to learn about and learn from experiences • taking one step at a time • maintaining control • using friends to help out • comparing oneself favourably with others • creating alternative ways of being (for example, moving the bed downstairs to increase independence) • reframing expectations of life and self. Wells’ study found that a number of these strategies was used during recovery from radiotherapy treatment.13 Creating a sense of purpose, and taking one step at a time were combined with a tendency to monitor and mark recovery. Going to the post office, doing some gardening, visiting the dentist again, all signified the return of normality. The kinds of achievement described in the following extracts may seem small, but it is important that nurses acknowledge their significance and encourage the adoption of meaningful coping strategies:13 As for getting back to normal, I’ve made a start, I’ve been out this weekend, bought a load of seeds, some compost. I shall know I’m back to normal once I’ve had my teeth done . . . just step by step really, isn’t it?

Unfortunately, the biomedical model concentrates on the pathophysiology of disease and impact of illness on specific clinical outcomes such as 5-year survival and recurrence. Symptoms are mainly seen in terms of being indicative of underlying pathology. Although sociological and coping models pay more attention to the meaning of illness for individuals, they focus on the human behavioural response to the disease process, and may neglect the importance of physical aspects of

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illness.79,80 A more integrated approach to understanding the impact of cancer is required.

Quality of life Models of quality of life incorporate both the physical and psychosocial dimensions of illness and have thus contributed a great deal to our understanding of the way in which cancer disrupts all aspects of life. It is now unusual for studies evaluating new treatments not to consider their impact on quality of life, even if their main focus is to assess effects on disease-free survival. Numerous definitions of quality of life exist, and many different methods of assessing quality of life are in use. Most focus on key domains such as physical, psychological, functional and social well-being. Many quality-of-life measures include disease-specific modules detailing symptoms and concerns likely to be experienced by particular patient groups. Although these tools cover a broad range of relevant issues that have an impact on patients’ quality of life, they do not provide any indication of what matters most to an individual. More recent quality of life measures such as the Patient Generated Index (PGI),81 and the Schedule for the Evaluation of Individual Quality of Life (SEIQoL),82 allow patients to create their own definition of quality of life, by asking them to identify the aspects of illness that have most impact on valued aspects of their lives. These tools reflect a concept of quality of life that embraces both the individual context and experience of illness. Kenneth Calman’s definition of quality of life in cancer as the difference between the hopes and expectations of an individual and the actual experience of their present situation enables this crucial concept to be understood.83 One study found that patients who experienced a discrepancy between their perceptions of their ‘ideal’ self and their ‘actual’ self had poorer physical health and lower levels of psychological wellbeing.84 If such perceptions can be adjusted, or supportive care can be directed towards bringing actual experiences and aspirations more closely together, it is likely to have a positive impact on the individual’s quality of life.

The impact of treatment Promoting quality of life during cancer treatment can be a real challenge, as the person has to deal not only with the emotional and psychological impact of the diagnosis but also the additional burdens of toxic and lengthy treatment. As already pointed out, the progression from diagnosis to treatment may not always be immediate, and the period of waiting for treatment to start can be extremely difficult. As David Izod recounts, it can be weeks before being seen by an oncologist and a treatment plan initiated, and is like being placed in a ‘twilight zone . . . a time of suspicion, rumour and possibility, and feeling utterly powerless’.85 Cancer treatment has emotional, social, physical and economic costs,86 and it is important that all these aspects are considered. Chemotherapy and radiotherapy require repeated visits to hospital, which are disruptive and costly. The side-effects of treatment can make people feel worse rather than better, producing ‘an unacceptable transformation from active, attractive independence to physically unattractive dependence’.39 The ‘chronic’ nature of cancer and the increasing use of combination therapies can mean that treatment can continue for months or even years. Although one of the main aims of curative therapy is to minimise late effects such as damage to vital organs, certain treatments will inevitably cause lasting side-effects or bodily changes, which can have a considerable impact on that person’s ability to lead the life they might otherwise have done (see Table 6.1). Table 6.1 does not contain a complete list of side-effects, but illustrates those that can continue beyond completion of treatment and that may compromise quality of life. Many studies of patients undergoing cancer treatment tend to isolate the impact of a particular therapy, which, although important in understanding the particular treatment, does not take into account the impact on the illness experience in its entirety. There is a need for more research that takes account of the impact of a range of treatments, symptoms, and events in the context of a person’s life.

124 The experience of cancer Table 6.1

The physical and functional impact of cancer treatments

Treatment

Potential impact

Surgery

Changes in body image due to scarring, loss of a body part, change in body shape Changes in mobility following loss of function, compromised range of movement, development of lymphoedema, or removal of body part Changes in diet due to absorption problems, shortened digestive tract or stoma formation following gastrointestinal surgery, and difficulties chewing or swallowing following head and neck surgery Changes in ability to communicate following head and neck surgery Changes in sensation following damage to nerves, including chronic pain Changes in elimination following pelvic surgery involving genitourinary or gastrointestinal tract Changes in sexual function following pelvic surgery, or body image change Fertility problems or infertility Cognitive impairment; memory loss, concentrationa Alopeciaa Generalised aches and painsa Weight changesa Weakness and fatiguea Renal or cardiac dysfunctiona Bone marrow depressiona (particularly prolonged in patients who undergo high-dose chemotherapy) Food aversions and taste changesa Dry mouth and/or throat following treatment to the head and neck87 Skin and vascular changes Fatiguea Changes in sexual function after pelvic radiotherapy Visual impairment and dry eyes if the eye is included in the radiation field Respiratory or cardiac dysfunction following radiotherapy to the chest (depending on dose, field and fractionation) Osteoradionecrosis after treatment to the head and neck, particularly if dentition is poor Bowel problems such as urgency, strictures or fistulae after pelvic treatment Urinary problems such as urgency and frequency after pelvic treatment Secondary malignancies

Chemotherapy

Radiotherapy

NB: These symptoms and problems do not affect all patients and their occurrence or severity will depend on numerous factors including the characteristics of the cancer, drugs or dose of treatment, area treated etc. a These symptoms are generally not permanent.

Surgery

The physical removal of a cancer through surgery can be reassuring, as it represents a cleansing and symbolic elimination of the evil within.4 Izod explains that his retroperitoneal node dissection following chemotherapy was ‘violent, purgative, cleansing and . . . final’.85 The impact of surgery is dependent on the significance of the site of surgery and individual effects it may have on body

image and concept of self. Surgery for cancer often results in some kind of disfigurement or mutilation, and may threaten social and sexual identity. Removal of part of the body such as the breast, uterus, tongue, larynx, or limb induces a profound sense of loss as well as functional change, and the assault on body image and sexuality may also have an enormous impact on intimate relationships and the ability to interact socially.

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The following is an excerpt from an interview with a patient and his wife following laryngectomy: It must be very embarrassing when you first use the artificial voice . . . the noise, people sort of look down to see where it’s coming from . . . a couple of our grand-daughter’s friends, they both stood there and laughed . . . sometimes when he’s eating, he can’t help it, he makes [imitates a loud gulping sound] type of noise. If we wanted to start up a conversation, we would just say hello, whereas he can only gape . . . we don’t go out much, I think he would be embarrassed if he was sitting in a restaurant and had to drink with a straw.13

Perhaps the most difficult aspect of cancer surgery is the sudden change it can produce. As John Diamond said:70 . . . the problem with major surgery – any surgery – is that there is no real way of anyone telling you how it will be when you come round . . . nobody can tell you how it feels to be that post-operative person, the person who is lying there waiting for the new chapter to start and with no idea of how that chapter will read [p.158].

Chemotherapy

Popular misconceptions about chemotherapy persist and many people still believe that severe vomiting and hair loss are inevitable. Although a range of debilitating side-effects are commonly experienced, sophisticated and effective drugs for managing these symptoms are now in widespread use. However, most people experience at least some of the following chemotherapy-related symptoms including nausea and vomiting, hair loss, mucositis, bone marrow depression, skin changes, diarrhoea, sterility, and damage to any of the major body systems. Alopecia appears to be one of the most distressing of these, symbolising cancer itself and stripping a person of their identity. A doctor who was being treated for leukaemia described this distress:88 I had four central lines, and I had two bouts of septicaemia, I lost every hair on my body, and it is the part of it that was really hard was the, the fact that you lose your identity. Because when I was at the hospital, and I would go down in the lift and up in the lift, and I

would meet some of my colleagues after and had to introduce myself. People I had known for twenty or thirty years [p.1331].

As well as causing overt side-effects, chemotherapy removes the ability to take pleasure in everyday aspects of life. David Izod remembers:85 I didn’t feel like drinking, smoking, had no sex and ate only to stop myself from vomiting. I didn’t laugh much and went to bed at 8 o’clock.

Studies have shown that the daily disruption and cumulative effect of having chemotherapy is significant and that patients and health care professionals underestimate the burden of side-effects, particularly tiredness.89 Patients in this study were more likely to report distress in diaries than in conversation with nurses and doctors, and nearly half had thought about discontinuing treatment, although few had discussed this with their doctor. Continual communication throughout treatment is clearly necessary, but there is evidence that nurses and doctors are not good at identifying the concerns of patients undergoing chemotherapy. A cross-sectional study of 33 women receiving treatment for breast, ovarian, cervical or uterine cancer found that nurses were much more likely to identify physical or treatment-related problems than psychosocial concerns, and that they were unable to identify the women’s three main concerns in 70% of cases.90 As well as causing significant emotional and physical disruption, chemotherapy has been associated with an increase in psychiatric morbidity. One study found that the incidence of anxiety, depression, and sexual difficulty was significantly higher in women who had undergone adjuvant chemotherapy after mastectomy, and that this was directly related to the degree of toxicity experienced.91 Some people find the concept of toxic drugs entering their body particularly difficult, and some develop phobic reactions to chemotherapy; in particular, anticipatory nausea and vomiting, characterised as a learned or conditioned response to chemotherapy. This syndrome develops when certain events or stimuli are associated with treatment; for example, the journey to the chemotherapy clinic or the smell of alcohol

126 The experience of cancer

wipes, inducing nausea and vomiting before the chemotherapy is actually given. Teaching progressive muscle relaxation and imagery can reduce anxiety and nausea, and can help people to overcome or control fears of the chemotherapy itself or the means by which it is administered. Radiotherapy

The technical and invisible nature of radiotherapy and the popular understanding that exposure to radiation actually causes cancer inevitably produces fear and misconception in patients who require radiotherapy. Departments of radiotherapy are usually housed in the basement or outbuildings of cancer centres, and for some patients this emphasises concerns about danger and isolation. Neither the experience of radiotherapy nor the development of supportive care strategies has received much attention in the literature.92 Studies have generally focused on symptoms, by measuring distress experienced at specific time points during and after radiotherapy. Diaries have also been used successfully by patients undergoing treatment, often revealing intimate detail about the individuality of the experience, which helps to create a picture of the impact of cancer and its treatment on everyday life.89,93–95 Attempts have been made to assess the emotional impact of radiotherapy using quantitative measures, but there have been few qualitative studies exploring patients’ own expressions of the experience of treatment. Although many patients describe radiotherapy as ‘a doddle’ compared with chemotherapy, the cumulative physical and emotional distress experienced with radiotherapy can be considerable. The daily disruption of attending for treatment for up to 6 weeks is compounded by an often insidious build-up of symptoms, which cause a gradual deterioration, not always noticed by health professionals, or even by those undergoing treatment themselves. Radiotherapy symptoms tend to develop towards the end of treatment, or may develop after treatment is finished. As a result, there may be insufficient access to expert help, leaving many to try and cope on their own with extremely debilitating side-effects. The following is an excerpt from an interview with a 42year-old man with parotid cancer.13

It happens so gradually that it sort of infiltrates slowly and you don’t realise how ill you are actually feeling . . . you don’t realise it’s waiting for you to say . . . it’s not bad enough to tell anyone about, and when it’s bad enough to tell anyone about, the pills you’re given aren’t good enough to do anything about it . . . you think they should be working and if they’re not working you must be doing something wrong because the doctor knows what he’s doing and he’s given you these pills, they’re not having any effect but they must be helping the pain because he’s given them to you.

Most specialist nursing roles and thus research and practice development have, up until recently, been concentrated in the area of chemotherapy rather than radiotherapy, perhaps because its sideeffects tend to be more obvious and immediate. Those undergoing radiotherapy have been perceived as ‘self-caring’ or ‘walking wounded’, and have not been seen to require the same level of expert nursing attention as those undergoing toxic drug therapy. This is a misconception, and has led to the neglect of the development of nursing interventions in this area.96 Recovery from treatment

Patients consistently report that the period after treatment is over can be particularly difficult. Although finishing treatment is often a huge relief and many patients will face the prospect of a full ‘recovery’, returning to normal is far from easy. As one patient said:13 It’s really hard when you have to start functioning normally again. You just aren’t the same person as you used to be. You’d like to get well as soon as possible and start working again, but you just can’t cope you know [p.150].

Far too little attention is paid to the immediate period following the end of treatment, when sideeffects may continue to be experienced, but also where there is loss of contact with the specialist treatment centre, which for many may have been a lifeline. Alby concludes that ‘discharge is feared just as much as it is wanted’, and describes the fear and uncertainty associated with this transition as due to a combination of factors:97 • the fear of leaving a protected environment with skilled, supportive staff

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• the fear of facing life with a different body (for example, as a result of weight loss, scars, loss or alteration of a body part, alopecia) • the constraints of treatment and diet (for example, immunosuppressive therapy following allogeneic bone marrow transplantation, steroid therapy, changes in diet following oesophagectomy, gastrectomy, or head and neck surgery).97 Frank and Izod both describe the importance of ‘ceremonies’ and ‘boundaries’, which provide some structure to life after cancer.3,85 Frank describes how difficult it was for him to ‘re-enter’ his world after the end of his treatment for testicular cancer.3 He believes that rituals are necessary to mark the end of treatment because they enable the process of re-entry to occur more easily. Even after ‘cure’ he described that his ‘consciousness remained suspended between the insulated world of illness and the healthy mainstream’. When cancer treatment ends, it is some considerable time before a person can know with any certainty whether treatment has been successful or that they have been ‘cured’. This is somewhat similar to the experience of having a chronic illness that is in remission. It may mean that people have no ‘socially sanctioned position on the health–illness continuum; they are neither sick nor well’.98 The period after treatment can be terribly hard for the cancer patient. For the previous six months, cancer, the treatment, and particularly the staff at the hospital had been the dominant factor in my life. And then all of a sudden nothing. I had been sucked in by the system as an ill person, treated by it and now it was spitting me out as a healthy person, but I was left with a very big hole. Although I hadn’t been discharged, indeed I won’t be for another 5 years, the intimacy had gone, there were other people more important than me, people whose treatment had just begun. And I didn’t know what the hell to do with myself.85

Considerable difficulty may be experienced at the end of successful treatment, since an individual’s ‘share of attention has been used up’,27 and they may feel that their problems are no longer legitimate. This may lead to self-doubt, a crisis of credibility, and the feeling that problems are not worthy of mentioning; a reluctance that may be

reinforced by health professionals who make light of them.79 In an interview study of women with breast cancer, at or around the time of recurrence, Robinson revealed that women felt supported up until the end of primary treatment, but they then experienced a lack of continuity of care and lack of interest in their case during outpatient consultations.99 They no longer felt treated as individual people, and expressed an unfulfilled desire to talk about the future. A review of psychological functioning in patients undergoing radiotherapy found that the completion of treatment can be a difficult time.100 Many patients experience emotional distress, unexpected side-effects and a lack of information and support after treatment ends. Wells found that despite the level of distress at this time, there was also a reluctance to ask for help – as one woman said: You don’t like to ring because there are other people still having treatment . . . you’ve finished your treatment, you ought to be fine.101

One problem for people completing radical treatment is that ‘routine follow-up’ practice does not always permit them to talk about their experiences, except in relation to the physical effects of therapy. The space and opportunity to explore meaning and the experience of cancer treatment appears to be reserved for those who are dying of their disease, rather than those who are in the recovery phase of illness. Nurse-led care may provide a more holistic approach to follow-up, and studies have shown that such models are safe and acceptable to patients.102,103 Many patients describe very mixed feelings about follow-up appointments. On the one hand, they want to be told that they are well and that there is no sign of disease, but on the other hand, they do not want to be reminded about their cancer by having to attend the clinic. This type of ambiguity and uncertainty often remains a persistent feature of living with cancer. A phenomenological study carried out in Iceland explored the ‘lived experience’ of nine men and women in remission from their cancer.35 An overriding theme of this experience was ‘experiencing existential changes’ encompassed by the five themes

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of uncertainty, vulnerability, isolation, discomfort, and redefinition. Uncertainty was experienced at all stages of the disease, about either the cancer itself, the efficacy of treatment, the threat of recurrence, or uncertainty about the likelihood of imminent death. Other studies have also revealed the pervasive nature of uncertainty. The following is an extract from an interview with a 41-year-old man receiving phase I trial chemotherapy for metastatic cancer of the parotid gland following disease progression after radical radiotherapy: The uncertainty’s the most difficult bit to deal with because there’s uncertainty about whether or not the treatment you’re having is doing any good, there’s uncertainty about basically how long you’ve got . . . there’ll always be uncertainty about how long I’ve got, I suspect, until I start getting symptoms that are very clearly demonstrating things . . . I don’t know whether . . . I’m going to be able to work next week . . . I never know how I’m going to feel . . . I’m getting myself a second hand car to do up as a project but to be perfectly honest I don’t know whether I’m going to be able to do it. . . .13

In Halldorsdottir and Hamrin’s study, vulnerability was another feature of having lived with cancer.35 The impact of communications with health professionals at this vulnerable time was identified, in particular, the necessity for the latter to offer respect, warmth and understanding. Isolation and loneliness had been experienced by most at some point during their cancer, either because they perceived or actually experienced rejection by others, or because they had shut themselves off or withdrawn from normal life. As one explained, ‘we cancer patients shut ourselves inside, draw the curtains, avoid people and feel poisonous’.35 All identified changes in themselves following the experience of cancer. Often these involved physical discomfort or an alteration in their perception of the world around them or of emotional relationships. Many felt they had become stronger or closer to those closest to them. Some did not feel so positive, regretting the incapacity imposed by the disease, or lamenting their changed role or position in society. The authors of the study recognise the limitations of generalising from a small interview study beyond the cultural and social

group of Icelanders represented in their research. However, it does demonstrate the need for security, certainty, care, and respect, as well as support to maintain a feeling of control over their situation and finding ways of redefining themselves or their lives.

Recurrence The threat of recurrence is ever present, and the uncertainty it causes is central to the experience of cancer.104 Lee-Jones et al. argue that fear of recurrence is a neglected area, and offer a model for understanding the way in which patients construct such fear.105 This model proposes that internal stimuli (e.g. symptoms) and external stimuli such as hospital appointments, family concerns, and media can work together to fuel personal worries and perceptions of risk. These personal cognitions, beliefs and emotions are also influenced by past experiences of cancer and its treatment, and are likely to lead to behavioural responses such as body checking, seeking advice, limited planning for the future, and a range of psychological symptoms. The dread that the disease may return is continuous, and if it does, anxiety and distress can be greater than at initial diagnosis, because the threat of death is ‘more real’.106,107 Many people have difficulty regaining their belief in the future,108 and if recurrence is diagnosed, this belief is explicitly challenged. Not only is the diagnosis devastating, but it also brings disillusionment that attempts at prevention or detection have failed.99 The identification of recurrent disease causes the future to be viewed in terms of uncertainty, death and dying, and loss. The psychological impact of recurrence is often compounded by a reduction in activity and stamina due to pain, weakness, or debilitating symptoms. The discovery of recurrent disease often evokes memories of the initial diagnosis and produces feelings of anger, injustice, fear, emotional volatility, and the need to regain control.109 It is important not to make assumptions that levels of understanding, treatment preferences, or support networks remain the same as before. Careful assessment is needed of an individual’s current

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condition, emotional or physical concerns, and support available.

Rehabilitation and survivorship There is increasing recognition of the importance of rehabilitation in helping people to live as normal a life as possible after a diagnosis of cancer. Surviving cancer may be a mixed experience; while cancer survivors often say that they lead more fulfilling, meaningful lives through experiencing life-threatening illness,110 they may also find it difficult to come to terms with the feeling that they do not deserve to be alive, or that they are not coping in the way they feel they should. This ‘survivor guilt’ may reflect a sense of unfulfilled desires and expectations, as described by a man who had apparently been cured of bowel cancer:88 Well I feel like it is, I feel like it is a weakness or you know, a thing that I should be able to control, be, be in charge of, my moods and be able to rise above them, you know, and just go ahead and do what I have to do, you know [p.1335].

In a British study, survivors of lymphoma described survival as a process through which stages of adjustment took place and changes had to be accepted.111 Although many felt that the experience of cancer had produced positive outcomes, several had found it very difficult to forget and move on from the experience, and had flashbacks in which aspects of their life as a cancer patient were continually recalled. The authors concluded that although survival may be adequate reward for some, others may seek to improve, change, or adjust their lives, struggling with the effects of cancer long after cessation of treatment. A survey of 687 cancer survivors who were members of the National Coalition for Cancer Survivorship in the US collected demographic and quality-of-life data.112 Although they were clearly a self-selected group – over three-quarters of the sample were women, and nearly half had breast cancer – the survey still provides an insight into the factors influencing quality of life in sur-

vivors. Psychological well-being was found to be lower than functional, social, or physical wellbeing, and this appeared to be affected by recall of initial diagnosis and treatment as well as fear of recurrence. Family distress and sexuality were reported as having the most negative influences on quality of life. Physical well-being was most severely affected by fatigue and aches and pains. Given that survivors appear to have more difficulty living with the psychological, social, and sexual consequences of cancer, it is unfortunate that the primary focus of cancer rehabilitation in the UK tends to be on regaining physical function or adapting to physical changes. Although vitally important, this is not the only aspect of rehabilitation that deserves attention. Many people need practical and emotional support in order to regain a sense of self-worth and purpose, and in order to resume social relationships and work. Employment and insurance difficulties have mainly been studied in the US, and there is evidence that people with cancer experience difficulties obtaining work and promotion.113–115 However, a recent study of colorectal survivors found that most people in their sample did in fact return to work, illustrating a more hopeful picture.116 Whether working or not, the financial burden of cancer and its treatment can be considerable. An interview study of people with lung cancer revealed that many patients lacked knowledge of the financial benefits they were entitled to, or experienced a struggle in obtaining advice and help.117 Difficulties obtaining affordable holiday insurance can cause significant worry and concern to people who have had a diagnosis of cancer. Resources produced by Cancerbackup on work, travel, and financial benefits are an invaluable source of practical and useful information as are those from Macmillan Cancer Support (www. cancerbackup.org.uk, www.Macmillan.org.uk). Although considerable controversy exists as to the extent to which psychological factors can influence survival, research studies of patients who have survived far beyond medical expectations provide compelling insights into the characteristics of ‘remarkable survivors’.118 A qualitative study found that nearly all of the 10 patients interviewed described three major qualities:

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• authenticity – a clear understanding of what was important in their lives • autonomy – perceived freedom to shape their life around valued activities and people • acceptance – perceived change in self-esteem, tolerance for others, closeness to others, and a more peaceful and joyous outlook. The authors of this study advocate a programme of psychological therapy aimed at enabling people to develop and fulfil these fundamentally important aspects of survival.118

Dying Inevitably, many patients will die of their cancer. When chronic illness becomes terminal illness, yet another adaptation is faced. Glaser and Strauss conceptualise the experience of dying using four ‘dying trajectories’:119 1. certain death at a known time 2. certain death at an unknown time 3. uncertain death but a known time when the question will be resolved 4. uncertain death and an unknown time when the question will be resolved. Many people want to know exactly when they are going to die, and ask direct questions such as ‘How long have I got?’. If death is inevitable, having some idea of when and how to expect it may feel preferable in such a distressing and uncertain situation. However, it is unlikely to be possible to identify the trajectory of certain death at a known time until the last few days or perhaps weeks of life and, rightly, few doctors are prepared or able to make such precise predictions. If they do, it can produce a feeling of marking time and waiting for disaster to strike, which may limit the ability to enjoy the life that is left, as the following excerpt from an interview with a 42-year-old man with metastatic parotid cancer illustrates: I was told that I’ve got between 4 and 12 months, so you think, right, when was I told? So 6 months from then is then, therefore I’ve got to make sure this month I’m going to feel all right, this month I’m going to be in bed all the time, this month I’ve had it.13

Other personal experiences of death may give rise to expectations or preconceptions. This may make it difficult to face the prospect of one’s own death. As one man who had been in the RAF explained: ‘I’ve always been rather accustomed to sudden death . . . quite, quick bang, just like that . . . sudden not drawn out, I can’t stand that . . . I don’t like this at all’.13 Thus he knew that he would die of his disease, but admitted that he was ‘scared stiff ‘, waiting for it to happen. The fears of the dying have been described, and the importance of eliciting individual experiences of death so that such fears can be understood has been highlighted.120 Most are understandably afraid of the unknown, of being separated from the people that they love, and of suddenly ceasing to exist. Fears of dying in pain, or alone, losing control of bodily functions or mind, dying suddenly or violently, or being rejected by friends and family are all common. If these fears can be discussed, and preferences about death are taken into account, including where the person wants to die, this can at least give back some control and enable care to be focused on preventing these fears from becoming a reality. Unfortunately, a plethora of studies illustrate that health care professionals do not do this successfully. Rogers and coworkers surveyed bereaved relatives who had experienced a cancer death, and they reported that their loved ones’ negative experiences of hospital care had arisen as a result of feeling devalued as individuals, not being treated with dignity, and being disempowered.121 The concept of a ‘good death’ has received increasing attention in recent years, and the development of hospice and palliative care services has transformed the care of dying patients. However, as Ellershaw and Ward point out, too many patients die an undignified death with uncontrolled symptoms.122 One of the key problems is in diagnosing dying. There are many opportunities for ambiguity and it is vital that the key signs and symptoms of dying are recognised and explicitly communicated to patients and relatives who wish to know. The Liverpool care pathway for the dying patient has been adopted by many hospitals and palliative care units, and provides a valuable framework for the care of people who are dying (see Box 6.4).123

The impact of cancer 131

Box 6.4 The Liverpool care pathway for the dying patient – goals of care • Comfort measures – assessment of current medication and discontinuation of non-essentials, as-required subcutaneous drugs prescribed, inappropriate interventions discontinued and avoided (including writing up do not resuscitate orders). • Psychological and insight issues – assessment of ability to communicate in English and translator organised if necessary, assessment of insight into condition. • Religious and spiritual support – needs assessed with patient and family. • Communication with family or others – identification of how family and others are to be informed of patient’s impending death, communication of relevant hospital information. • Communication with primary health care team – communication with general practitioner about patient’s condition. • Summary – plan of care explained and discussed with patient and family and understanding of plan of care shown by patient and family. Adapted from Ellershaw and Wilkinson (2003).123

Providing sensitive care that addresses all the above issues is clearly very much dependent on a full assessment of the individual’s needs and also on the flexibility and creativity of the caring team. If a person does have to die in hospital, nurses can do a great deal to integrate rather than separate the experience into the life of that person. Too often we stick to the rules and try to constrain the experience, or imagine that we can protect families from some of the realities of death. Sometimes families prefer not to be involved, but it can make a huge difference to both the dying person and their family if they are permitted to be part of the experience.

Conclusion This chapter began with an acknowledgement of the overwhelming disruption that a diagnosis of cancer causes, and a recognition that every person with cancer is different and will have a different experience. Adequate recognition of these differences is essential to understanding the impact cancer has on that individual. Examples have

shown that the personal meaning of cancer and the context in which cancer is experienced may strongly influence a person’s adjustment and adaptation to their diagnosis. Life can be profoundly disrupted at any stage of the cancer trajectory, disturbing physical, emotional, financial, social, and spiritual equilibrium. Fear and uncertainty can suspend any sense of future, and ‘normal’ life takes on a different interpretation. Living with cancer, however, is not always an overwhelmingly negative experience; for many, it precipitates a re-evaluation of priorities and relationships that may greatly improve life. Many opportunities exist for nurses to contribute towards improving the experience of cancer. At every stage of the cancer trajectory, nurses can provide support and care that will enhance quality of life in its widest possible sense. This chapter has illustrated potential times of vulnerability during the trajectory, and demonstrated some of the many problems faced when living with a cancer diagnosis. Nurses are in a unique position to anticipate and respond to these problems, and to develop care strategies that will help to reduce the impact of cancer in whatever sense it is felt. Assessing and understanding differences between individuals – their responses, support systems and interpretations of their illness – must be the starting place.

References 1. Clark R.N., Jeffries N., Hasler J. and Pendleton D. (2002). A Long Walk Home. Oxford: Radcliffe Publishing Limited. 2. Keswick Jencks M. (2003). A View from the Frontline. London, Expedite Graphic Ltd. 3. Frank A.W. (1991). At the Will of the Body. Reflections on Illness. Boston, MA: Houghton Mifflin. 4. Guex P. (1989). An Introduction to Psycho-oncology. London: Routledge. 5. Barraclough J. (1995). Cancer and Emotion: A Practical Guide to Psycho-oncology, 2nd edition. Chichester: John Wiley. 6. Patterson J.T. (1987). The Dread Disease. Cancer and Modern American Culture. Cambridge, MA: Harvard University Press. 7. Dorsett D.S. (1991). The trajectory of cancer recovery. Scholarly Inquiry for Nursing Practice: An International Journal 5, 177–184.

132 The experience of cancer 8. Sontag S. (1991). Illness as Metaphor. London: Penguin Books. 9. Benner P. and Wrubel J. (1989). The Primacy of Caring: Stress and Coping in Health and Illness. Menlo Park, CA: Addison–Wesley. 10. Tritter J. (2002). Cancer as a chronic illness? Reconsidering categorization and exploring experience. European Journal of Cancer Care 11, 161–165. 11. Little M. (2004). Chronic illness and the experience of surviving cancer. Internal Medicine Journal 34, 201– 202. 12. Saegrov S. and Halding A. (2004). What is it like living with the diagnosis of cancer? European Journal of Cancer Care 13, 145–153. 13. Wells E.M. (1995). The Impact of Radiotherapy to the Head and Neck: Patients’ Experiences During and After Completion of Treatment. University of London: Institute of Cancer Research, unpublished MSc thesis. 14. Kirk P., Kirk I. and Kristiansen L.J. (2004). What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. British Medical Journal 328, 1343– 1349. 15. Buckman R. (2005). Breaking bad news: the S-P-I-KE-S strategy. Community Oncology 2, 138–142. 16. Ziebland S., Chapple A., Dumelow C. et al. (2004). How the internet affects patients’ experience of cancer: a qualitative study. British Medical Journal 328, 564– 569. 17. Jones R., Pearson J., McGregor S. et al. (1999). Randomised trial of personalised computer based information for cancer patients. British Medical Journal 319, 1241–1247. 18. Jenkins V, Fallowfield L. and Saul J. (2001). Information needs of patients with cancer: results from a large study in UK cancer centres. British Journal of Cancer 84, 48–51. 19. McNamara S. (1999). Information and support: a descriptive study of the needs of patients with cancer before their first experience of radiotherapy. European Journal of Oncology Nursing 3, 31–37. 20. Macleod U., Ross S., Fallowfield L. and Watt G.C.M. (2004). Anxiety and support in breast cancer: is this different for affluent and deprived women? A questionnaire study. British Journal of Cancer 91, 879– 883. 21. Leydon G., Boulton M., Moynihan C. et al. (2000). Cancer patients’ information needs and information seeking behaviour: in depth study. British Medical Journal 320, 909–915. 22. Taylor E.J. (1995). Whys and wherefores: adult patient perceptions of the meaning of cancer. Seminars in Oncology Nursing 11, 32–40.

23. Loeshcher L.J., Clark L., Atwood J.R., Leigh S. and Lamb G. (1990). The impact of the cancer experience on long term survivors. Oncology Nursing Forum 17, 223–229. 24. Cassel E.J. (1982). The nature of suffering and the goals of medicine. New England Journal of Medicine 306, 639–645. 25. Kleinman A. (1980). Patients and Healers in the Context of Culture: An Exploration of the Borderland between Anthropology, Medicine and Psychiatry. Berkeley, CA: University of California Press. 26. Good B.J. and DelVecchio Good M. (1980). The meaning of symptoms: a cultural hermeneutic model for clinical practice. In Eisenberg L. and Kleinman A. (eds.) The Relevance of Social Science for Medicine. Dordrecht: Reidel, pp. 165–196. 27. Bury M. (1991). The sociology of chronic illness: a review of research and prospects. Sociology of Health and Illness 13, 451–468. 28. Wenger A.F.Z. (1993). Cultural meaning of symptoms. Holistic Nursing Practice 7, 22–35. 29. Saillant F. (1990). Discourse, knowledge and experience of cancer: a life story. Culture, Medicine and Psychiatry 14, 81–104. 30. Williams G.H. (1984). The genesis of chronic illness: narrative reconstruction. Sociology of Health and Illness 6, 174–200. 31. Mathieson C.M. and Stam H.J. (1995). Renegotiating identity: cancer narratives. Sociology of Health and Illness 17, 283–306. 32. Carlick A. and Biley F. (2004). Thoughts on the therapeutic use of narrative in the promotion of coping in cancer care. European Journal of Cancer Care 13, 308–317. 33. Chelf J., Deshler A., Hillman S. and Durazo-Arvizu R. (2000). Storytelling: a strategy for living and coping with cancer. Cancer Nursing 23, 1–5. 34. Atwood M. (1997). Alias Grace. London: Virago Press. 35. Halldorsdottir S. and Hamrin E. (1996). Experiencing existential changes: the lived experience of having cancer. Cancer Nursing 19, 29–36. 36. Corner J., Hopkinson J., Fitzsimmons D. et al. (2005). Is late diagnosis of lung cancer inevitable? Interview study of patients’ recollections of symptoms before diagnosis. Thorax 60, 314–319. 37. Monfardini S. and Yancik R. (1993). Cancer in the elderly: meeting the challenge of an ageing population. Journal of the National Cancer Institute 85, 532– 538. 38. Edlund B. and Sneed N.V. (1989). Emotional responses to the diagnosis of cancer: age related comparisons. Oncology Nursing Forum 16, 691–697.

The impact of cancer 133 39. Naysmith A., Hinton J.M., Meredith R., Marks M.D. and Berry R.J. (1983). Surviving malignant disease: psychological and family aspects. British Journal of Hospital Medicine 30, 22–27. 40. Priestman T. (1986). In Stoll A.B. (ed.) Coping with Cancer Stress. Dordrecht: Matginus Nijhoff, pp. 21–27. 41. Finerman R. and Bennett L.A. (1995). Guilt, blame and shame: responsibility in health and sickness. Social Science and Medicine 40, 1–3. 42. Rowe D. (1987). Beyond Fear. London: Faber. 43. Kubler-Ross E (1970). On Death and Dying. London: Tavistock. 44. Weisman A. and Worden J.W. (1976–1977). The existential plight in cancer: significance of the first 100 days. International Journal of Psychiatry in Medicine 7, 1–15. 45. Greer S., Morris T. and Pettingale K.W. (1979). Psychological response to breast cancer: effect on outcome. Lancet ii, 785–787. 46. Pettingale K.W., Morris T. and Greer S. (1985). Mental attitudes to cancer: an additional prognostic factor. Lancet i, 750. 47. Greer S., Morris T., Pettingale K.W. and Haybittle J.L. (1990). Psychological response to breast cancer and 15 year outcome. Lancet 335, 49–50. 48. Watson M., Haviland J., Greer S., Davidson J. and Bliss J.M. (1999). Influence of psychological response on survival in breast cancer: a population based cohort study. Lancet 354, 1331–1336. 49. Petticrew M., Bell R. and Hunter D. (2002). Influence of psychological coping on survival and recurrence in people with cancer: systematic review. British Medical Journal 325, 1066. 50. Greer S. (2002). Psychological intervention. The gap between research and practice. Acta Oncologica 41, 238–243. 51. Brennan J. (2001). Adjustment to cancer – coping or personal transition? Psycho-oncology 10, 1–18. 52. Moorey S. and Greer S. (1989). Psychological Therapy for Patients with Cancer. Oxford: Heinemann Medical Books. 53. Bandura A. (1977). Self efficacy. Toward a unifying theory of behavioural change. Psychological Review 84, 191–215. 54. Schulz U. and Mohamed N. (2004). ‘Turning the tide: benefit finding after cancer surgery. Social Science and Medicine 59, 653–662. 55. Bandura A. (1994). Self-efficacy. In Ramachaudran V.S. (ed.) Encyclopedia of Human Behavior. New York: Academic Press. 4, 71–81. 56. Rabin C., Leventhal H. and Goodin S. (2004). Conceptualization of disease timeline predicts posttreat-

57. 58.

59. 60.

61.

62.

63.

64.

65.

66.

67.

68.

69.

70. 71.

ment distress in breast cancer patients. Health Psychology 23, 407–412. Bailey C. (1995). Management of breathlessness. European Journal of Cancer Care 4, 184–190. Futterman A.D. and Wellisch D.K. (1990). Psychodynamic themes of bone marrow transplantation: when I becomes thou. Haematology Clinics of North America 4, 699–709. Freir V. (2004). Childhood trauma. Cancer Nursing Practice 3, 17–19. Baider L., Peretz T. and Kaplan De-Nour A. (1992). Effect of the holocaust on coping with cancer. Social Science and Medicine 34, 11–15. Sollner W., DeVries A., Steixner E. et al. (2001). How successful are oncologists in identifying patient distress, perceived social support, and need for psychosocial counselling? British Journal of Cancer 84, 179– 185. Van Halteren H., Bongaerts G. and Wagener D.J. Th. (2004). Cancer and psychosocial distress: frequent companions. Lancet 364, 824–825. Zigmond A. and Snaith R. (1983). The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica 67, 361–370. Watson M., Greer S., Young J. et al. (1988). Development of a questionnaire measure of adjustment to cancer: the MAC scale. Psychological Medicine 18, 203–209. Slevin M., Nichols S.E., Downer S.M. et al. (1996). Emotional support for cancer patients: what do patients really want? British Journal of Cancer 74, 1275–1279. Newell S.A., Sanson-Fisher R.W. and Savolainen N.J. (2002). Systematic review of psychological therapies for cancer patients: overview and recommendations for future research. Journal of the National Cancer Institute 94, 558–584. Uitterhoeve R., Vernooy M., Litjens M. et al. (2004). Psychosocial interventions for patients with advanced cancer – a systematic review of the literature. British Journal of Cancer 91, 1050–1062. Bredart A., Cayrou S. and Dolbeault S. (2002). Re: Systematic review of psychological therapies for cancer patients: overview and recommendations for future research. Journal of the National Cancer Instititute 94, 1810–1811. Medical Research Council (2000). A Framework for Development and Evaluation of RCTs for Complex Interventions to Improve Health. London: Medical Research Council. Diamond J. (1998). Because Cowards Get Cancer Too. London: Vermilion. Frankenberg A. (1993). Time, Health and Medicine. London: Sage.

134 The experience of cancer 72. Payne S., Jarrett N. and Jeffs D. (2000). The impact of travel on cancer patients’ experiences of treatment: a literature review. European Journal of Cancer Care 9, 197–203. 73. Carver C. and Antoni M. (2004). Finding benefit in breast cancer during the year after diagnosis predicts better adjustment 5 to 8 years after diagnosis. Health Psychology 23, 595–598. 74. Taylor S.E. (1983). Adjustment to threatening events. A theory of cognitive adaptation. American Psychologist November, 1161–1173. 75. Beadle G., Yates P., Najman J.M. et al. (2004). Beliefs and practices of patients with advanced cancer: implications for communication. British Journal of Cancer 91, 254–257. 76. Koller M., Lorenz W., Wagner K. et al. (2000). Expectations and quality of life of cancer patients undergoing radiotherapy. Journal of The Royal Society of Medicine 93, 621–628. 77. Heidrich S.M. and Ward S.E. (1992). The role of the self in adjustment to cancer in elderly women. Oncology Nursing Forum 19, 1491–1496. 78. McWilliam C.L., Stewart M., Brown J.B., Desai K. and Coderre P. (1996). Creating health with chronic illness. Advances in Nursing Science 18, 1–15. 79. Waxler N.E. (1980). The social labelling perspective on illness and medical practice. In Eisenberg L. and Kleinman A. (eds.) The Relevance of Social Science for Medicine. Dordrecht: Reidel, pp. 283–306. 80. Morse J.M. and Johnson J.L. (eds.) (1991). The Illness Experience: Dimensions of Suffering. London: Sage. 81. Ruta D., Garratt A., Leng M. et al. (1994). A new approach to the measurement of quality of life. The Patient-Generated Index. Medical Care 32, 1109–1126. 82. Waldron D., O’Boyle C., Kearney M., Moriarty M. and Carney D. (1999). Quality of life measurement in advanced cancer: assessing the individual. Journal of Clinical Oncology 17, 3603–3611. 83. Calman K.C. (1984). Quality of life in cancer patients – an hypothesis. Journal of Medical Ethics 10, 124– 127. 84. Heidrich S.M., Forsthoff C.A. and Ward S.E. (1994). Psychological adjustment in adults with cancer: the self as mediator. Health Psychology 13, 346–353. 85. Izod D. (1996). The patient’s perspective. Plenary paper given at the 9th International Conference on Cancer Nursing, 12–18 August, 1996, Brighton, UK. 86. Pearce S., Kelly D. and Stevens W. (2001). More than just money – widening the understanding of the costs involved in cancer care. Journal of Advanced Nursing 33, 371–379.

87. Khoo V. (2003). Other late effects. In Faithfull S. and Wells M. (eds.) Supportive Care in Radiotherapy. Edinburgh: Churchill Livingstone, pp. 348–371. 88. Little M. and Sayers E. (2004). While there’s life. Hope and the experience of cancer. Social Science and Medicine 59, 1329–1337. 89. Love R., Leventhal H., Easterling D.V. and Nerenz D.R. (1989). Side-effects and emotional distress during cancer chemotherapy. Cancer 63, 604–612. 90. Farrell C., Heaven C., Beaver K. and Maguire P. (2005). Identifying the concerns of women undergoing chemotherapy. Patient Education and Counseling 56, 72–77. 91. Maguire P., Tait A., Brooke M., et al. (1980). Psychiatric morbidity and physical toxicity associated with adjuvant chemotherapy after mastectomy. British Medical Journal 281, 1179–1180. 92. Wells M. and Faithfull S. (2003). The future of supportive care in radiotherapy. In Faithfull S. and Wells M. (eds.) Supportive Care in Radiotherapy. Edinburgh: Churchill Livingstone, pp. 372–382. 93. Faithfull S. (1992). The diary method for nursing research: a study of somnolence syndrome. European Journal of Cancer Care 1, 13–18. 94. Wells M. (1998). The hidden experience of radiotherapy to the head and neck: a qualitative study of patients after completion of treatment. Journal of Advanced Nursing 28, 840–848. 95. Sharp L., Laurell G., Tiblom Y., Anderson A. and Birkjsö R.M. (2004). Care diaries: a way of increasing head and neck cancer patients’ involvement in their own care and the communication between clinicians. Cancer Nursing 27, 119–126. 96. Wells M. (1998). What’s so special about radiotherapy nursing? European Journal of Oncology Nursing 2, 162–168. 97. Albi N. (1991). Leukaemia bone marrow transplantation. In Watson M. (ed.) Cancer Patient Care: Psychosocial Treatment Methods. Cambridge: British Psychological Society/Cambridge University Press. 98. Kagawa-Singer M. (1993). Redefining health: living with cancer. Social Science and Medicine 37, 295–304. 99. Robinson L. (1994). Cancer Recurrence: a Phenomenological Study. London: King’s College, London, unpublished MSc thesis. 100. Steigelis H., Ranchor A. and Sanderman R. (2004). Psychological functioning in cancer patients treated with radiotherapy. Patient Education and Counseling 52, 131–141. 101. Wells E.M. (1994). The First Few Weeks at Home: Patients’ Experiences of Finishing Radiotherapy to the Breast. London: University of London, Institute of Cancer Research, unpublished care study.

The impact of cancer 135 102. Moore S., Corner J., Haviland J. et al. (2002). Nurseled follow-up and conventional medical follow-up in management of patients with lung cancer: randomised trial. British Medical Journal 325, 1145–1147. 103. Corner J. (2003). The role of nurse led care in cancer management. The Lancet Oncology 4, 631–636. 104. Nelson J.P. (1996). Struggling to gain meaning: living with the uncertainty of breast cancer. Advances in Nursing Science 18, 59–76. 105. Lee-Jones C., Humphris G., Dixon R. and Hatcher M.B. (1997). Fear of cancer recurrence – a literature review and proposed cognitive formulation to explain exacerbation of recurrence fears. Psycho-oncology 6, 95–107. 106. Mahon S., Cella D. and Donovan M. (1990). Psychosocial adjustment to recurrent cancer. Oncology Nursing Forum 17, 47–52. 107. Hall A., Fallowfield L. and A’Hern R. (1996). When breast cancer recurs: a 3-year study of psychological morbidity. Breast Journal 2, 197–203. 108. Breaden K. (1997). Cancer and beyond: the question of survivorship. Journal of Advanced Nursing 26, 978–984. 109. Mahon S. (1991). Managing the psychosocial consequences of cancer recurrence: implications for nurses. Oncology Nursing Forum 18, 577–583. 110. O’Connor A.P. and Wicker C.A. (1995). Clinical commentary: promoting meaning in the lives of cancer survivors. Seminars in Oncology Nursing 11, 68–72. 111. Wallwork L. and Richardson A. (1994). Beyond cancer: changes, problems and needs expressed by adult lymphoma survivors attending an out-patients clinic. European Journal of Cancer Care 3, 122–132. 112. Ferrell B.R., Dow K.H., Leigh S., Ly J. and Gulasekaram P. (1995). Quality of life in long-term cancer survivors Oncology Nursing Forum 22, 915–922.

113. Hoffman B. (1989). Cancer survivors at work: job problems and illegal discrimination. Oncology Nursing Forum 16, 39–43. 114. Mundy R., Moore S. et al. (2001). A missing link: rehabilitation counseling for persons with cancer. Journal of Rehabilitation April/May/June, 47–49. 115. Spelten E.R., Sprangers M.A.G. and Verbeek J.H.A.M. (2002). Factors reported to influence the return to work of cancer survivors: a literature review. Psychooncology 11, 124–131. 116. Sanchez K., Richardson J. and Mason H.R.C. (2004). The return to work experiences of colorectal cancer survivors. AAOHN Journal 52, 500–510. 117. Chapple A., Ziebland S., McPherson A. and Summerton N. (2004). Lung cancer patients’ perceptions of access to financial benefits: a qualitative study. British Journal of General Practice 54, 589–594. 118. Cunningham A. and Watson K. (2004). How psychological therapy may prolong survival in cancer patients: new evidence and a simple theory. Integrative Cancer Therapies 3, 214–229. 119. Glaser B. and Strauss A. (1965). Awareness of Dying. Chicago, IL: Aldine. 120. Stedeford A. (1994). Facing Death: Patients, Families and Professionals, 2nd edition. Oxford: Sobell. 121. Rogers A., Karlsen S. and Addington-Hall J. (2000). ‘All the services were excellent. It is when the human element comes in that things go wrong’: dissatisfaction with hospital care in the last year of life. Journal of Advanced Nursing 31, 768–774. 122. Ellershaw J. and Ward C. (2003). Care of the dying patient: the last hours or days of life. British Medical Journal 326, 30–34. 123. Ellershaw J. and Wilkinson S. (2003). Care of the Dying: a Pathway to Excellence. Oxford: Oxford University Press.

CHAPTER SEVEN

The impact of cancer on the family Hilary Plant

The impact of cancer on an individual is invariably a profound and life-changing experience, with the consequences frequently continuing long beyond the initial period of treatment. The impact of this disease on the family and friends of someone with cancer may be equally disturbing, but perhaps harder to recognise or know how to support. ‘Family’ is not easy to define, holding a different meaning for each individual according to their personal history. The concept of family may hold inherent connotations of its ‘nuclear’ form. The Canadian Palliative Care Association defines a family as, ‘those closest to the patient in knowledge, care and affection. This includes the biological family, the family of acquisition (related by marriage/contract), and the family of choice and friends (not related or by marriage/contract)’.1 For the purpose of this discussion, the term ‘family’ will be broad and inclusive; the focus is on the defining relationships in a person’s life, those with whom there is a degree of emotional attachment, however complex this might be. Thus the terms ‘family’ or ‘relatives’ are used to refer to those who are close to a person who has been diagnosed with cancer, and includes partners, parents, offspring, siblings, and close friends. Family relationships are dynamic, and the diagnosis of cancer in one member will resonate throughout the whole social group, changing the relationship with the person who has cancer and relationships with one another. This will be influenced by the stage each individual has reached

in their own developmental process and their social circumstances – their own health, financial circumstances, sex, and any co-existent events or stressors. The experience of cancer is also mediated by factors such as the relationship an individual has with the person who has cancer, their own perceptions and understanding of cancer, and the site and stage of the cancer involved.2–4 The major themes concerning the impact of cancer on families are interrelated and surround: • • • • •

the experience of cancer for families communication within the family living with cancer in the family interacting with health care professionals approaches to caring for families.

Each of these will be illustrated by comments made by individuals who took part in a study undertaken with the families of people diagnosed with lung or colorectal cancer.5 These experiences were explored through in-depth interviews, undertaken over a period of 18 months. Participants who took part in the study were from diverse although ethnically similar social backgrounds, and all had established relationships with the person with cancer. Cancer is predominantly a disease of middle and older age, and the focus of this chapter is on the impact that it has on adults. The experiences of young children whose parents have cancer, or those affected by childhood cancer itself are also included through their experiences

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as reported in the literature, as are those of individuals from culturally diverse backgrounds.

The experience of cancer for families The close family and friends of someone with cancer will experience distress. However, the extent of such distress is difficult to gauge. For many there is a deep ‘existential’ element to this, which can be hard to understand or talk about, but that is in essence a fundamental loss of one’s bearings and a sense of unreality created by the threat to the life of someone close. This is often accompanied by a tangible change in outlook – for example, in life’s priorities or direction. The news of a cancer diagnosis in a partner, friend or relative can cause intense emotional disturbance in the form of sadness, depression, anxiety, or anger.6 This may also manifest in a range of physical problems such as fatigue, weight loss, or insomnia.7 Just as for the person with cancer, the experience for families evolves over time as the illness progresses. Individual family members will feel the impact of cancer differently. This is illustrated by the comments of the following woman whose husband was newly diagnosed with cancer of the lung: But of course, when anybody sort of says the word cancer, the first thing you think about is, that’s it, you’ve not got a chance in hell . . . you can’t imagine the feeling until it actually happens . . . a very good friend of mine had cancer . . . so I mean I’ve been through the stages of it and it was pretty horrendous, but then it was a friend, not my husband . . . [now] it’s like a blood relation . . . whatever Arthur was going through I was going through, I was going through the same with him.5

The threatened loss precipitated by a cancer diagnosis in the family causes the onset of grief since ‘part of the social context for understanding, organising, validating, and defining feeling, action, values, and priorities is removed . . .’.8 Thus grief can be seen as arising not only because of a loss of a person but also because of losing a part of the foundation for dealing with loss and with all of

experience,8 as Anna Quindlen’s fictionalised account of a daughter’s experience of her mother’s cancer illustrates: I remember that the last completely normal day we ever had in our lives, my brothers and I, was an ordinary day much like this one, a muggy August-intoSeptember weekday. Afterward I wondered why I hadn’t loved that day more, why I hadn’t savoured every bit of it like soft ice cream on my tongue, why I hadn’t known how good it was to live so normally, so everyday. But you only know that, I suppose, after it’s not normal and everyday any longer. And nothing ever was after that day.9

A feeling of loss of security following the diagnosis of cancer in a partner can be experienced as the woman below expresses. She yearns for the time in her life when she felt safe and cared for: . . . the mental torture of it all. But I suppose it would be nice to have someone like your mum, it’s stupid isn’t it, but it’s the comfort. You know when you are ill at home and you’ve been a young child, and your mum’s there and it’s lovely, but as you get older unfortunately you haven’t got these people around you anyway. You are the person. It’s the security you miss.5

Much of this loss of security must stem from the fact that for most, the immediate thought on hearing the diagnosis of cancer is that the person they love is going to die.10,11 Partners may in fact express more fear of death than the person with cancer themselves,12 as one husband describes when his wife was in hospital having surgery for bowel cancer. He was frightened for her but also very frightened for his own world without her. Many express the wish that it was they themselves who had the cancer, since this might make them feel more in control, or prevent them facing the prospect of being left alone: . . . at the time I was really scared . . . of her dying, because again . . . it’s self . . . it’s giving way to yourself . . . just because somebody else is dying, you should be sorry for them, but no if you’re honest, you’re worried about yourself.5

Life may change quite fundamentally as a result of the diagnosis of cancer – for example, giving

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up work to care for the person with cancer, moving to live nearer them, or taking on additional household tasks. Important aspects of family lifestyle may be lost, for example, holidays no longer planned, or there may be financial difficulties, sometimes to the extent of losing one’s home if there is a substantial loss of earnings. In other instances there might be a less obvious change in daily life creating more of a sense of uncertainty and confusion about plans and hopes for the future. For example, a man whose wife had colorectal cancer reflected that:

intensity of distress between the person with cancer and their spouse.17 Attempts have been made to assess the levels of anxiety and depression experienced amongst families where one member is diagnosed with cancer.18 Helplessness, fear, and anger are reported as the most stressful emotions encountered amongst those who have family or friends undergoing chemotherapy.19 A man whose wife was in hospital with colorectal cancer and who was himself disabled commented:

. . . you come to a sort of junction and you change . . . you go off a different way . . . it changes your whole life . . . there’s no two ways about that.5

I could have gone off the deep end, one hears about people in hospitals who go and rush into the casualty and thump the doctors, I can sympathize with them . . . because to them why isn’t somebody doing something, they don’t know what is happening, they see you calm and quiet, I sympathize with them. When you don’t know . . . this is . . . animal instinct. If you don’t know you bite it or hit it or something, and I’m prepared to accept that . . . that when you’re reduced to the minimum, all you do is act like an animal.5

A young woman who had only recently left home, described her thoughts about how the loss of practical and emotional support from her mother would change her life: . . . all I could think of was . . . what’s going to happen to me, who’s going to look after me . . . she was going to organize my wedding and look after me when I have children.5

This may be reflecting the view of a teenager or young adult affected by cancer in a parent. Adult children may perceive that their parent has changed because of the cancer and they may find this difficult and wish that it had not happened.13 The relationship between parent and child is an important source of security throughout life, and disruption to this in childhood creates a vulnerability to psychiatric disorder in adulthood. Anxiety levels experienced by a child who has a parent with cancer are decreased when they have an understanding about the illness and are able to communicate well with their parents.14 The parents of a child with cancer will invest everything in the child during the illness in the hope of recovery and all other aspects of life may become neglected.15 Several studies indicate that distress in family members is as great or greater than in the person who has cancer themselves.16 One study that attempted to identify the pattern of crisis experienced following discharge after surgery for bowel cancer found that there were few differences in the

Many relatives appear to find it hard to reflect on their own emotional distress. Sometimes it is easier to describe the physical manifestations of the emotional upheaval than more abstract emotions. For example, when relatives describe hearing the diagnosis they may recall reactions such as feeling ‘dizzy’, having a ‘dry mouth’, feeling ‘cold’, or unable to speak for some time. If these coincide with the moment when important information regarding the diagnosis or treatment is being communicated by doctors, or when they are asked if they have any questions, this may act as a barrier to full understanding of the news. One man who found it hard to express his worries described how he felt when he heard his wife’s cancer had spread: I felt as though something had been stuck inside me . . . a knife or something, I don’t know. That was the piercing blow I think . . . It was as though I had a sword stuck in me. It was like . . . that sort of feeling you get when . . . going to pass out . . . the hot feeling that goes right inside.5

These acute physical reactions experienced at times of stress such as on hearing the diagnosis

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or the news of recurrence, are usually short-lived, but they can contribute to longer-term difficulties in functioning by causing fatigue, anorexia, or insomnia. The husbands of women with breast cancer have been found to report increased moodiness, loss of energy, and growing fears about their own illness and death. This has been attributed to the fact that these men deny their own feelings and place those of their wives at the foreground of their thoughts, intensifying deeper anxieties.10 During the course of her father’s lung cancer, a woman commented on her own deterioration: . . . but I suppose really your health does deteriorate, you feel tired, you feel irritable, in my case you lose weight, you find it hard to put back on, you’re tired, but you can’t sleep, and it does catch up with you in the end.5

A man describing his home when his wife was in hospital with lung cancer commented: What was it like? Like a mortuary . . . fed up, I hardly ate, I hardly cooked anything. Well I didn’t fancy it, know what I mean? . . . Even the whisky there, one night I had a good dose of it, it didn’t make no difference.5

In brief, those close to a person diagnosed with cancer will experience a wide range of reactions to the illness. Their feelings will be complex and often difficult to express. They themselves may become unwell. These issues may not be readily apparent to the health professionals whose acknowledgement of the relative’s situation, particularly around the time of diagnosis, might provide support and ease the strains that can exist between patient, relative, and professional.

Communication within the family The social consequences of cancer on the family are many and varied, and are exacerbated by the commonly experienced difficulties of talking about cancer. Communicating about the illness, changes in roles and coping strategies employed by different family members all have important

social implications for family dynamics and functioning. The diagnosis of cancer in a family will have an impact not only on the internal world of each family member, but also on their relationships with the person who has cancer, and with others in their circle of acquaintances. Where relationships are strained, for example with an ex-partner or work colleagues, the tension may be heightened. People report that some (usually more distant) relationships are terminated entirely. In Personal account 7.1, a young woman with ovarian cancer describes the impact on her relationship with her husband Paul,20 illustrating how cancer may cause a slight but significant ‘turning away’, even in the most supportive relationships. Anne describes how she and her husband are adjusting together to the painful process they are going through. After 4 years of illness, it had become impossible to sustain the emotional Personal account 7.1 Paul was so reluctant to tell me but I knew anyway. Fatigue has worn him down. The constant uncertainty, the ever present threat that I am going to die, has turned him away from me a little. It is so hard to remain committed to someone, not knowing whether they will be there in a few months or a few years time. I can understand that. And the uncertainty goes on and on. The tenderness when I was first diagnosed couldn’t possibly be sustained without a break for nearly four years. I didn’t expect or want it to. It would have been easier if I had either died or been cured quickly but it just isn’t like that. In a sense Paul is going through the same painful process of adjusting to this latest progression that I have had. The same resentment to the sharp cutting off of a relaxed attitude to life and an indefinite future. Anger at the possibilities we can’t choose anymore . . . It would be easier if I was less demanding, more oblivious, but I can’t be. I have to be myself. More so perhaps now that I am under threat. I don’t have the time, the patience to be untrue. That is part of the problem too. It hasn’t been all bad. Cancer has given me opportunities for self development and I have taken them with both hands . . . But Paul has been holding back, simply because I have cancer. I was angry when he said that, how could he be so patronising. I felt a little guilty too. I hadn’t seen what was my advantage not to see.

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closeness created at the time of diagnosis in the face of the prolonged uncertainty Anne’s cancer had caused both of them. While studies have shown that the reactions to cancer and the adjustment process are remarkably similar in both the person with cancer and family members, there are also important differences.21 As in the case of Anne and Paul, cancer may confer some (albeit possibly unwanted) benefits to the person with the disease. However, this is less likely for the relative. Anne feels that Paul is ‘holding back’ or putting her first, attempting to protect her. Talking about cancer and its implications and uncertainties is difficult. Much of this difficulty arises from a desire (for all parties) to protect each other from any additional hurt or pain. In a study of the husbands of women with breast cancer,18 few (less than 7%) were found to have discussed their worries with anyone, and an interview study with the families of people with lung cancer found that most spouses were not sharing their concerns with them.16 Even couples who profess a very close relationship or who have similar coping styles can be set apart by cancer, however much they attempt to share their feelings about the illness. This will ultimately lead both to feel a sense of loneliness. Many people with cancer and those close to them declare and practise a philosophy of being open about the illness and of talking about it together. Nevertheless, there are invariably some things that are very difficult to share. Communication may be open for the person with the disease, but not for the relative in terms of expressing emotions such as anger, fear, or disappointment. Relatives may not have a place to vent their own emotions and sometimes find that they are becoming the ‘butt’ for the emotions of the person with cancer, with nowhere to take them or pass them on themselves. The following comments illustrate the difficulties of being a ‘cancer relative’. One man describes the week after his wife’s diagnosis with breast cancer: I think almost every time after she had gone out and I was on my own doing something I would quite often break down and cry, but she didn’t realize that.5

Another man explains how his wife complains about her treatment in hospital: I mean she comes home and she shouts off . . . spouts off at me so then I take the deflect on that, you know, I feel the same as she does then . . . in fact more.5

If there is a decision as a family that the illness will not be discussed, a wall of unexpressed emotion between the person with the disease and their family can be created. The exclusion of friends or family can be engendered by the person who has cancer if they refuse to talk about their illness, which may be very hard to bear. The implications of the cancer for siblings, adult children, or friends, those who are less publicly involved in the daily life of the person with cancer, may not be acknowledged by other social acquaintances or work colleagues or by health professionals. Friendships sustained by infrequent meetings are vulnerable, and can be disrupted or lost altogether, since the illness may make keeping in contact very difficult. A sister comments on the distancing of her brother through cancer: You feel you’ve done everything you can and then you’re just shut off from it when you feel you want to be there. And you want to say something but you’re not being given the opportunity to sort of say the right words . . . I think one of the hardest things is that when you feel you could be there for somebody they put up a barrier against you . . .5

Changes in roles at home, work, or socially have been found to occur in families, such as altered employment, household schedules, or curtailed social activities.16,22 Recreational activities, finances if the person who is ill is the main source of income, and career plans may be severely disrupted. Sexual difficulties are common between partners where one has cancer. Fear and anxiety can decrease libido, as do many cytotoxic drugs. The fatigue experienced as a result of the disease or its treatment decreases interest in sex. Changed appearance may also cause embarrassment or physical difficulties. Many relatives and friends have a conscious or unconscious desire to protect someone they love who has cancer from any additional hurt, both

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real and imagined. However well-meaning, this can add to problems in communicating. Wortman and Dunkel-Schetter hypothesise that other people’s reactions to a person’s cancer are as a result of conflict between the essentially negative feelings about cancer and their beliefs about appropriate behaviours to display towards the person who has the disease, such as optimism and cheerfulness.23 They believe that this conflict results in responses that may be unintentionally damaging to the person with cancer, such as physical avoidance, and avoidance of open discussion. While social support is potentially beneficial to wellbeing, those closest to someone with cancer may be unable to give it in the most helpful way. Anxiety and tension can result among family members who are constantly worried that they will say the wrong thing. Buffering or shielding the person who has cancer from painful information and experiences is common. The most extreme form of this might be for the family to try to prevent the individual from knowing their diagnosis. This now happens infrequently, although families may still wish to protect the person from knowing the full extent of the severity of their illness and may not pass on any additional information that they have gleaned from health professionals. Hiding the full extent of the emotional distress the illness is causing and behaving in ways that they believe will be reassuring is also common, and reflects the ways in which families deal with illness. Protecting the person with cancer from painful situations also allows the relative to avoid facing difficult emotions. However, this may create a barrier or distance between the person with cancer and those close to them. A woman whose husband was concerned about how she would cope after his death comments: I try to hold it in . . . I suppose what I try to do a lot is make him feel that I can manage, ‘cos that’s what he worries about.5

A daughter who wants to protect her mother from distress about her son’s illness comments: . . . when you are close to people you tend not to want to worry or upset them, there is this barrier, between close relationships.5

One relative may attempt to shield others in the family whom they feel are vulnerable, an elderly mother, for example. Nevertheless, even those perceived as most vulnerable, such as children or the elderly, are usually better prepared to cope if they are aware of what is happening. As a 14-year-old girl whose mother died from ovarian cancer told her therapist: I can cope with honesty I can’t cope with secrecy. Sophie aged 14 (Dreamcatchers, Dorset (2005). Personal communication)

While parents of children with cancer may want to protect the sick child, other relationships between family members may become neglected. Siblings in particular may feel resentful about the increased closeness between their parents and the child with cancer.15 The child’s experience and ability to understand what is happening will obviously be dependent on their developmental stage.24 Separation from a parent who is sick in early childhood will be followed by protest, despair and detachment, accompanied by possible bedwetting, constipation and sleeping difficulties. In later childhood the loss of a parent may commonly cause emotional and behavioural problems.24 Relatives may attempt to monitor the person’s environment to ensure that they do not encounter something untoward to upset them; for example, avoiding media coverage of cancer that may include survival statistics. They also monitor the person themselves, checking for subtle changes in their well-being, such as in their eating or energy levels. The families of people undergoing radiotherapy have been found to monitor symptoms closely even though this was not requested by health professionals,25 and this can be overprotective and frustrating for the person undergoing treatment. Others attempt to keep the sick person from ‘dwelling’ on their cancer, encouraging them to take up an activity and think about other things. Thus, when cancer occurs within a family, adjustments in communication result – some conscious, some unconscious. Frequently these arise because open discussion of the disease and all its consequences is too difficult. The protection strategies employed by both the person

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with cancer and their relatives can sometimes exacerbate the problems consequent on opaque communication.

Living with cancer in the family The social impact of the cancer and its effect on family relationships become part of day-to-day living with cancer. For example, the protection strategies just described are both a way of caring and a way of coping with the fear and uncertainty created by the illness. There are many ways of defining care, and the amount and nature of caring undertaken, both practical and emotional, by families and friends will be variable.4 The extent to which families provide care for the person with cancer is dependent on their relationships, perceptions of the illness, degree of physical problems, and level of dependency caused by the disease. Offering and giving care can be an important means of coping for some families, although other family groups may be so distant or dysfunctional that they will not take part in the course of the illness. Current research about care given by informal carers reflects both these contradictory, but closely interwoven elements of being both burdensome and rewarding.4 Many families will not actually perceive themselves as carers; rather they see themselves as dealing with changes in their daily routine brought about by the illness. Indeed, frequently people with cancer are quite well and are able to look after themselves. A study of people with cancer and their families during chemotherapy found that the people with cancer ‘often vigorously resisted receiving help from others and strongly desired to maintain their self-care’ (p.263).26 Nevertheless, some additional practical tasks are invariably required even in the early stages of the illness. For example, for some people the biggest single problem may be fatigue, which can necessitate the family taking on extra practical duties.7 In the face of terminal illness, the family caring for their relative at home will have great demands placed upon them, and a large resource of emotional and practical support is likely be required:27–30

. . . it’s the watching, it tears you apart inside, because you can only do a certain amount for him, and sometimes I know I get on his nerves, I say ‘Can I get you a drink?’ . . . ‘Can I get you this?’ ‘Shall I do that for you?’ . . . ‘What if you had this?’ ‘What if you have that?’ And I know sometimes it does get on his nerves . . . but it’s my way of trying to do something for him, and when I see him sitting there . . . really surviving as it were, and struggling, I just . . . I think ‘Oh lord what are you doing . . . take him home now at the suffering.’5

‘Standing by’ and ‘watching’ as the disease progresses is an active process requiring emotional energy. The need to care and do something to help, even if this is not required, is intense. The physical demands of providing care while also struggling to make sense of the suffering observed are immensely demanding for families.28,30 Adult children of people diagnosed with cancer may experience their family role abruptly changing to that of a support person in which they might feel more like parents themselves, and they might feel unprepared for this.13 The term ‘caregiving burden’ has been used to describe the caring activities of families of people with cancer.28 McCorkle and coworkers conducted an interview study on the caregivers of people discharged from hospital who had complex care problems.29 Caregivers were interviewed three times over a 6-month period. Even though the person’s condition stabilised or improved over the 6 months, caregivers continued to report high levels of burden. Caregivers of those whose mental state was poor and who had greater responsibilities for physical care experienced greater impact on their daily life, finances, and health. Other studies have shown that caring for someone undergoing radiotherapy results in substantial time spent providing transport, undertaking extra household tasks, and giving emotional support.25 For those caring for the terminally ill, the most frequently reported demand has been managing physical care, and this is made more difficult by the family carer’s lack of expertise in this role.30 The ‘emotion work’ involved in caregiving particularly around the management of emotions – both of the patient and those close to them – is key.4,25,28,31 The difficulties of caring increase with time, and in the case of cancer this may be prolonged

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over several years. The negative effects of caregiving have primarily been reported after the responsibility for care has continued for 2 years or more.27 A sister describes the long-term emotional drain of caring in the following terms: You do feel guilty and I suppose really if you are very honest with yourself after a while (and this is the hardest thing in the world to say) you resent illness. And this sounds awful but . . . when someone’s ill for a long time like that you do somewhere deep inside you begin to think, you know, you’re never going to get better or . . . It’s hard to explain, I suppose it’s almost an intolerance after a while which you then feel terribly guilty about.5

Caring is not always perceived as a burden by the relatives. In some instances caring is ‘internally related’ to self-identity (Cribb A. (1999). Personal communication). The need to care is inherent within the person and is not something that is thought out or planned. Relatives may not comprehend any other option but to care.32 The person concerned will not necessarily want to relinquish any of their caring role to outsiders and this may create problems for those who might believe that the family needs help, and would like to offer support. A man who takes unpaid leave from work after his wife is diagnosed with cancer describes the following situation: And some people at work for instance have said, you know one person said ‘You’re being very unselfish about this’. And I said ‘Well it’s nothing to do with that’, and somebody else said ‘You know it’s very good of you to give up work rather than trying to bury yourself in the work’. And it was no more like that than flying to the moon. I thought about it over that night and there was no way I could vaguely think about going to work.5

One woman described her feelings about caring for her husband: What kind of a burden is it? If it is classed as a burden . . . I don’t class him as a burden, not at all. I don’t class it as a duty, not at all. I do it because I love him, I love him.5

Observers of such care may see this as ‘heroic’ but for the caregiver themselves, they are doing

the only thing they can in the circumstances.33 It has been suggested that ‘caring allows the person to focus on the event or the one cared for rather than on personal threat’ (p.3).33 For example, ‘doing’ things for the person to ensure their comfort can help to ameliorate feelings of grief about their illness. Concern to feed and nourish the person with cancer can be central to this for some. Large amounts of energy may be expended on searching out and cooking food, and attempting to present it in a way that is enticing. The activity of preparing and cooking food is a way of trying to do something constructive, bringing some normality to life and countering anxiety and deeper concerns, but this can also cause strain in the relationship. Cleaning and other household activities are also a means of maintaining order during times of stress for some people. Sustaining this level of caring over time, however, may become difficult. The relatives themselves may not perceive that they have needs of their own, which may be amenable to outside help. Women continue to undertake the majority of care at home.34 They have been described as ‘invisible’,35 or ‘forgotten’,34 and the considerable time spent caring or even just being available for the person with cancer may often compromise other aspects of their life. Sisters rather than brothers, and daughters before sons become the closest support for the patient.5 Place within the family, relationships and allegiances in childhood, personal circumstances and geographical distance are likely to play a part in who takes on the caring role. Teenagers may find it particularly difficult to provide support.36 Their desire for independence may not fit easily with a possible requirement to take on more responsibility at home, and they may find it hard openly to acknowledge their feelings about the situation. Caring does not necessarily involve practical activity. Parents have been described as ‘keeping vigil’ over their hospitalised child. This is more than simply being in close proximity to the child at their bedside; it is ‘more often an intense bearing witness with the child’s plight’.37 The parents of a child with cancer have been described as functioning as a ‘protective filter’ through which experiences may filter both ways.38 The parent filters what goes through to the child, and the child’s

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experience of distress may be filtered back to the caring team through the father or mother. Although parents of sick children experience a particularly intense need to share their child’s affliction, the need to be there and to be part of the experience applies to the families of adults as well. Tension may also arise in the parents’ relationship when a child has cancer because of the different roles and the separation that may occur during the illness. Women who tend to spend more time with the child appear better placed to cope with the illness than fathers, who are more likely to try to maintain life as it was.15 Families are made up of diverse individuals with their own explanations and coping styles, and some families as a whole will create their own way of coping with the illness and its meaning.39 Nevertheless, it is the individual diversity within the same family group that may create the most stress. For both the person with cancer and family and friends, cancer disrupts the way they see their life and future. In order to cope with the uncertainties brought by the disease, their view of the future may need to be reconstructed. In terms of organising the family’s lives it is most often the desire of the person with cancer that is adhered to. Some (quite appropriately) begin to make plans for their death and the family’s life after death; but this may be distressing for families. Sometimes cancer precipitates a review of life, and a heightened awareness of mortality, or the decision to realise long-held ambitions. This is hard for a relative who has no such excuse and may not be included in the plans, who has to adjust their own to fit in with those of the person with cancer. It may no longer be possible for the family members to make plans of their own. This may create tension. For many, communicating the feelings of uncertainty that illness has brought, or the feelings surrounding the knowledge that there will come a time when they will be living alone, may be impossible. Making sense of the illness is difficult. The cancer itself may be explained by factors such as lifestyle, smoking or diet, but there is invariably little attempt by the relatives to make sense of why this disruption has happened to their own lives. The lack of opportunity to talk about and work through their own experience of the cancer may

make it hard for the relatives to come to terms with it. A diagnosis of cancer usually introduces into a family an onus to provide physical and emotional support. This may fall unevenly on the various members. For some it is accepted unquestioningly and the provision of physical care may be integral to a relative’s coping mechanisms. Those close to the person with cancer may rarely spend time reflecting on their own needs, and contemplation of their own future may become difficult.

Interactions with health professionals and the health care system Research studies indicate that although the distress of the family and friends of someone with cancer is invariably high, it is inadequately addressed by health professionals, who frequently exclude them from care.18,22,40 In Personal account 7.2 there are two extracts from interviews conducted in the same week with a brother and sister who share a house. They were recorded 18 months after the brother was diagnosed with advanced colorectal cancer. The sister’s life revolves around her brother’s illness and she considered later in her Personal account 7.2 When you’re faced with an illness you can do nothing about and it has the potential to kill you, it’s not like a broken leg which is going to get better, you are wholly in the hands of the doctors and their attitude is of paramount importance to your own feelings about what you’re going through . . . And the attitude at the hospital was superb, it was all hopeful and you know, things to be done, and of course they were carrying on the treatment. Brother

I still think the doctors and nurses are treated as if they’re almost God, I still think that there is that feeling, although we’re meant not to be impressed by these things . . . we are. You still tend not to think . . . of them as another human being who I can talk to . . . like you might talk to the ticket collector at the tube station . . . you do still tend to have this feeling that you should be looking up to them, you know they’ve descended from dizzy heights.5 Sister

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interview when she would have to give up work to look after him full-time. Their attitudes towards the professional carers are strikingly different. The brother perceives the care he is receiving as good, but in effect this excludes his closest relative. The sister does not find the professionals either approachable or accessible. She has a need for information and later in the interview expressed the need for support for herself, although this is prevented by her situation. She is not married to the person with cancer, she is his sister, thus the professionals may not anticipate her needs to be great. She has at times a strained relationship with her brother who neither informs her of what is happening nor likes her to come with him to the hospital. Indeed, he does not want her to know very much. She, like many relatives, also has a full-time job and an elderly mother to care for. She thus remains on the margins of the medical care that her brother receives. Most studies show that, whatever their own needs, relatives want good clinical care to be provided above all else, and where care is good most will declare themselves satisfied.41 This overwhelming concern for the well-being of the person with cancer means that it is difficult for the family to consider or declare their own requirements for help as distinct from those of their sick relative. Professional carers profoundly influence families’ experience of cancer, for good or bad. For some, contact with health professionals is a key focus for the whole experience and there is great appreciation where care is perceived as good. However, distress may be high for those who have no contact with health professionals, and where staff are difficult to approach or information giving is poor. Hull interviewed family caregivers at home in the weeks before their relative died, to examine caregiving behaviours among people who were part of a hospice home care programme.41 Families identified four essential aspects of good care: 24-hour accessibility, effective communication, a non-judgemental attitude, and clinical competence. These are likely to be equally important to families at earlier stages of the disease. Several studies report that the telephone is an important means of maintaining contact when the person has been discharged from hospital.11 The follow-

ing comments from the wife of a man undergoing chemotherapy show how reassuring a telephone link to health professionals can be: It’s that sort of relationship there . . . to know that you can actually phone them and you know who you are talking to . . . by face, is very important . . . particularly this problem, because you want to relate it to somebody that you know.5

A woman caring for her sick husband at home comments: So I found myself reaching for the phone . . . getting ready to phone for the district nurse, but then thinking, ‘Should I? Shouldn’t I?’ . . . I was worried, can I be doing any more for him? So if somebody had just like come or phoned, and said . . . ‘how are things . . . It’s three weeks since I last came. I know you said you don’t need help, but how are things? Right?’ and then I could say . . . ‘Oh well by the way . . . he’s got such and such thing at the moment, is that all in order’ . . . Do you see what I mean?5

Lack of information or understanding of the care and treatment can be agonising. Parents of children with cancer have been described as experiencing ‘heightened cue awareness’, where the need for information creates a ‘tendency to attribute meaning and significance to just about anything that is said or done by professionals’.11 This ‘over-interpretation’ of the comments or behaviour of health care professionals is born out of a need for information and reassurance and is also likely to be experienced by all of those close to someone with cancer. In the first 30 000 calls to the cancer information service of the British Association of Cancer United Patients (Cancerbackup), more calls were received from relatives than from people with cancer themselves.42 They required information in two key areas: medical information and support services. The need for honest, sensitively delivered information given at the appropriate time is crucial yet beset with potential difficulties, and the need to ‘have questions answered honestly’ has been ranked as the highest need amongst relatives.42 The family make themselves known to professional carers by their bedside vigil, attendance at hospital appointments, or requests for

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information. The contact with the professionals is likely to be couched in terms of how best to fulfil the patient’s needs, with the relative possibly perceiving that they have no ‘right’ to make any request for themselves. Relatives who, because of work or other demands, have difficulties in making themselves accessible to the health care system, remain invisible to health carers. In addition, relatives may not behave in a way that is expected by others, particularly health professionals who may have no knowledge of the histories and motivations of those involved. Furthermore, the strategies patients use for living with their cancer may inhibit communication between their families and health professionals. If someone is coping by knowing as little as possible about their illness, their relatives may also be denied information. Below, a woman describes how her husband prevented her from knowing that he was to be discharged following a thoracotomy, even though she would need to care for him and change his dressings: . . . the doctor told him he could come home, but he didn’t tell me. I was going in three times a day, going in the morning, and then going in the afternoon and coming back and going in the evening . . . sometimes my daughter came in with me, but most times I was there, and he didn’t say anything . . . and all of a sudden . . . The nurse came up to do something . . . and said, ‘Oh anyway, you’re going home tomorrow’. So I looked at him, you know . . . ‘I knew three days ago’ [he said] . . . he was frightened to say about it.5

It is not uncommon for someone to desire privacy about their disease and refuse to be accompanied on visits to the hospital. Just as relatives and friends attempt to protect the person with cancer from anxiety about the illness, the person themselves may desire to protect family from difficult news or from witnessing them being unwell; for example, while having chemotherapy. This is particularly pronounced for parents who wish to protect their children, even when they may be adults themselves. Alternatively, a relative’s own anxiety about the situation may prevent them from attending hospitals and clinics. This can also hinder the recognition of their need for help. Some people do not want what they regard as interference from outsiders in their homes, and this can also create barriers to the provision of adequate support.

Cancer is predominantly a disease of older adults and therefore close family and friends may also be elderly, with their own health problems, which prevent them from attending the hospital. For example, the daughter of a man with lung cancer described anticipating the day when her father would be taken into a hospice, which would mean that her mother who was housebound with cardiac failure would never able to see him again.5 For a relative with a serious chronic illness or disability who is dependent on the person diagnosed with cancer, the consequences are likely to be serious since they risk losing the person who has supported and cared for them. Lack of familiarity with the health care system can preclude the family from being able to speak to professional carers. A study in Britain revealed a lack of cultural sensitivity, which created deficiencies in access and provision of palliative care services to the black and minority ethnic communities.43 For those who do not have English as a first language, information about services and diagnosis in the language of their choice was found to be unavailable.43 The need for accessible support at diagnosis and information about symptoms was particularly emphasised. Close family and friends may react to the illness in a way that professionals might not expect. Furthermore, contact with professionals may be inhibited by various factors such as longstanding, unresolved differences with the person who has cancer resulting in an apparent lack of concern, or non-attendance at the bedside of a dying relative, or by refusals of help offered by professionals. Complicated relationships within the family may obscure the distress of some of those affected from the professionals – for example, ex-partners who share children. The difficulties of ensuring that adequate support is given to the whole family may be compounded by the geographical spread of modern families who live many miles apart.

Approaches to caring for families Family distress is both substantial and complex.44 The role of the health professionals in providing support for the family is much less well defined than when providing care for the person with

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cancer. Early discharge and the increasing use of high-technology treatment at home is increasing the level of care expected from family and friends.29 Independently of any care they offer themselves, families require support. However, family members can be difficult to identify, and many relatives are unable to express what their own needs or requirements from nurses might be. Caring for the person with cancer is sometimes a crucial part of managing the illness for families, therefore wellintentioned but insensitive outside support risks causing key coping mechanisms to collapse. For many reasons it is not straightforward to assess the needs of the family.45,46 A recent literature review of support for informal carers in cancer and palliative care identified few targeted interventions with only a very small number of these being evaluated.47 The challenges of introducing new interventions directed at family caregivers in palliative care have been identified in a further review of the literature and these are described in three broad categories: challenges related to the family, their relationships, and ways of living with the illness; barriers in the communication process, both within the family and with the health professionals; and health system barriers including insufficient resources and lack of health professional skills.48 In addition, since family members are not usually physically ill there may be a further issue about where the responsibility lies for providing them with support. In cases of more severe distress, hospital health professionals need to be prepared to refer them for specialist counselling.44,49 Nurses who know the person with cancer and who come into contact with the family are well placed to be able to offer support, although it is not currently always clear what the best form of such support might be. National Guidance produced for England and Wales in 2004 highlights family and carers’ need for support and the issue that it is not always available to them.50 While acknowledging that there is currently no clear evidence to suggest just how this should be implemented, the guidance recommends, amongst other things, that family members and carers should be offered the opportunity for their needs for support and information to be assessed separately from those of the patient. Carers should be

made aware of, and have easy access to, culturally sensitive sources of local information, advice and support.50 Care strategy 7.1 • • • • • • • • • • • • •

Do not prejudge the situation. Identify key people who might constitute ‘family’. Provide a contact telephone number. Listen to the relative’s own story and acknowledge what is important for them. Be sensitive to the level of adjustment. Provide a supportive environment for the expression of distress. Be aware of the possible need to facilitate family communication. Be sensitive to individual requirements for information. Prepare for what might happen during the course of the illness. Attend important consultations with the family. Facilitate practical and financial support when required. Refer on to appropriate professionals where necessary. Assist attendance at support group if required.

Having the opportunity to talk about the experiences of having a member of the family with cancer, and acknowledgement of these is helpful for families.51 The most commonly cited concern for relatives has been reported as ‘dealing with the symptoms’. While relatives may acknowledge the need for information, the need to express their fears and other emotions is often identified as a low priority.52 A dilemma revealed in a number of studies of the needs of families has been: . . . related to whether families wanted to share their feelings. If families needed to maintain control of their emotions and if the nurses encouraged them to ventilate their feelings, this was distressing and unsupportive. In contrast, if families wanted to discuss problems and share their feelings, the nurses’ ability to explore these feelings was perceived as caring. The nurses needed to be sensitive enough to take the cue from what families were comfortable doing.41

Relatives need a calm unhurried approach by nurses, since it takes time to form a relationship

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of trust with individuals who may be anxious and frightened. Children of people with cancer benefit from open and honest communication about illness. Parents will need support from early in the course of the disease about how to deal with their children’s feelings, reactions and questions about the cancer.14 Judd describes the role of the ‘involved witness’ in psychotherapeutic intervention with teenagers with cancer, a role that nurses may fulfil, even if intensive psychotherapy is not planned: During the initial stage of the family’s attempt to survive the shock of diagnosis, the therapist’s usefulness is in being an involved witness: to feel, to hear, to register, and attempt to ‘contain’ the immediate as well as the far-reaching implications. This early position is important to subsequent work with the family or individual, without which it is difficult for the sufferer to feel understood or be believed.45

It is important that professionals are knowledgeable about and sensitive to racial and cultural issues for the family.43 If time and attention have been given to establishing a relationship with the family as well as with the person with cancer, some of these issues will become easier and nurses will be more attuned to the appropriate moment and style for communicating with an individual family. Confidentiality for the patient creates dilemmas when working with families. Relatives may want to speak with nurses without the person with cancer being present, in order to glean more information, and to protect them from difficult news. Families need their own time to allow communication; however, in most circumstances they should not be given information that the person themselves does not know, and if they are this should be discussed with the person and family together. Some may want information withheld from the person. If this is an issue, the opportunity to explore feelings surrounding the desire not to communicate openly is important, as is the facilitation of more open discussion about the disease in families. The need to have accurate and accessible information given sensitively at the appropriate time is clear. However, this may be a difficult task; Ball et al.

describe what was helpful to the parents of children with cancer: Skilled communicators are able to convey a sense of ‘ifs and buts’ and medical realism, while still holding out the possibility of a successful outcome to treatment.11

Families need the opportunity to prepare them as much as possible for what may ensue. A recent audit of contact between family and carers of people with lung cancer and lung cancer nurse specialists in the UK found that there was a significant amount of contact with those close to the person with cancer, with 78% of this occurring by phone and about half initiated by the family.53 Both the person who has cancer and their family may need to know how future events might unfold, perhaps to make them less frightening. ‘Therapeutic emplotment’ has been described as a technique used by physicians whereby an attempt is made to provide continuity in discussions about illness; by agreeing together the likely course of the disease, this reduces uncertainty.54 The need for information and emotional support has provided the impetus for the establishment of self-help and voluntary organisations over the last few years. While these organisations play a vital part in supporting families, they do not excuse health professionals from providing information and explanation in the most appropriate way.55 One of the most frequently expressed unmet needs for families is a place to discuss their fears.56 Long-term intensive psychotherapy is unlikely to be sustainable for families facing the trauma of cancer; instead, a supportive relationship, especially in the early days following diagnosis, is possibly the best solution: . . . therein, the therapeutic ingredients are empathy, attempts at understanding the confusions around crisis (some of which may echo earlier infantile traumas), understanding the ensuing losses, giving words to feelings and the facilitation of grief.38

A study comparing death in a hospital with death in a hospice found that following death in the hospice where more open communication had been facilitated, surviving family members

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were less anxious and depressed, more involved socially, and less likely to be using tranquillisers.57 An environment that allows the family open expression of grief, a resolution of unfinished business, and times for the person and family to talk about their life after the anticipated death is ideal.57 Support groups either exclusively for the family or that include the person with cancer are one way of enhancing the support available, and in some instances have been shown to improve communication within the family. A study of a support group offered to the male partners of women with breast cancer using ‘sex role therapy’ reported that the group members became significantly more communicative with their spouses about issues to do with mastectomy than members of a control group did.10 Wellisch et al. describe a group initially set up specifically for the families of people with cancer.58 Among the aims were to enhance communication between people with cancer and their families, and to enable them to deal with intrapsychic conflicts concerning serious illness. This group was led by a clinical psychologist, but had a nurse as part of the team. After a few months the group was extended to include the person with cancer as well, and attendance by family members increased markedly. The authors found the group a safe arena for the expression of powerful emotions such as fear, rage, and sadness. Support groups by no means suit everybody, and the availability of a support group does not necessarily mean that those invited will automatically attend and be supported. An evaluation of a support group for people with cancer and their families and friends at a London hospital showed that only a small number of those invited attended. For the people with cancer who attended, 80% felt happier and more relaxed, compared with only 46% of relatives who attended the group. A majority said that talking about cancer was easier after attending the group.59 Wortman and Dunkel-Schetter discuss a family therapy programme which: . . . makes cancer patients and their family members aware of the complicated social environment in which they may be trapped, and which encourages more

open communication . . . family members could be taught that their feelings of anger and guilt towards the patients are normal under the circumstances.23

Despite the challenges of supporting a loved one through cancer, there is increasing evidence of how, in the right circumstances, the caring can have a positive impact on the experiences. An interview study of family caregivers in advanced cancer revealed that 60% could readily identify positive aspects of their role, which for some appeared to provide some meaning to the experience, for example through becoming closer to the person with cancer, or stronger as an individual.60 Information, access to resources and symptommanagement education were some of the key factors which it was proposed might lessen the stress for people giving care.60 As in all aspects of health care these issues are increasingly being addressed by people with cancer and carers themselves. Deborah Hutton, an English journalist diagnosed with lung cancer, responded to her experience of the desire of her family and friends to do something to help her, by writing an anthology of practical examples of the ways in which this need to support someone you care about who has been diagnosed with cancer might be galvanised into action.61 Detailed practical advice for carers about issues such as symptom management and communication is provided by a physician who is both cancer patient and carer himself,62 highlighting and hopefully strengthening the partnership between the professional carers and those doing the caring at home. Relatively little attention has been paid to the impact of cancer on those close to a person with cancer, by either health professionals or researchers. It is apparent that a complex alteration in the emotions and patterns of communication between family members follows a diagnosis of cancer. These changes will accompany, and sometimes conflict with, the practical adjustments that might of necessity be made. Health care professionals should view the needs of other family members as integral to those of the person with cancer. Acknowledgement that the illness will impact on relatives, and assuring that their individual needs for support and information are recognised are key first steps. Nurses are

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often well placed to initiate and facilitate the process of meeting these needs. One woman’s feelings about her need for support was as follows: People need it . . . I mean not to sort of go there for counselling, we had each other for that and I wouldn’t have wanted anyone to invade our privacy, but just to sort of understand . . . what they’re saying to you, for them to sort of talk to you in English . . . So people could . . . begin to understand, begin to think that there’s more than this . . . and hope . . . things like that.5

References 1. Canadian Palliative Care Association. (1998). Standards for Palliative Care Provision. Ottowa: Canadian Palliative Care Association. www.chpca.net/home.htm (accessed 24 July 2007). 2. Given B., Dwyer T., Vredevoogd J. and Given B. (1988). Family caregivers of cancer patients: reactions and assistance. In Pritchard P. (ed.) Fifth International Conference on Cancer Nursing. London: Macmillan Press, pp. 39–43. 3. Rolland J. (1989). Chronic illness and the family life cycle. In Carter B. and McGoldrick M. (eds.) The Changing Family Life Cycle. A Framework for Family Therapy, 2nd edition. Boston, MA: Allyn and Bacon. 4. Thomas C., Morris S. and Harman J. (2002). Companions through cancer: the care given by informal carers in cancer contexts. Social Science and Medicine 54, 529– 544. 5. Plant H. (2000). Living with cancer: understanding the experiences of close relatives of people with cancer. Unpublished Ph.D. thesis, University of London. 6. Pitceathly C. and Maguire P. (2003). The psychological impact of cancer on patient’s partners and other key relatives: a review. European Journal of Cancer Care 39, 1517–1524. 7. Krishnasamy M. and Plant H. (2004). Carers, caring and cancer-related fatigue. In Armes J., Krishnasamy M. and Higginson I. (eds.) Fatigue in Cancer. Oxford: Oxford University Press, pp. 157–175. 8. Rosenblatt P. (1988). Grief: the social context of private feelings. Journal of Social Issues 44, 67–78. 9. Quindlen A. (1996). One True Thing. London: Arrow. 10. Sabo D., Brown J. and Smith C. (1986). The male role and mastectomy support groups and men’s adjustment. Journal of Psychosocial Oncology 4, 19–31. 11. Ball S., Bignold S. and Cribb A. (1996). Death and the disease: inside the culture of childhood cancer. In Howeth

G. and Jupp P. (eds.) Contemporary Issues in the Sociology of Death, Dying and Disposal. London: Macmillan Press. 12. Gotay C. (1984). The experience of cancer during early and advanced stages: the views of patients and their mates. Social Science and Medicine 18, 605–613. 13. Germino B. and Funk S. (1993). Impact of a parent’s cancer on adult children: role and relationship issues. Seminars in Oncology Nursing 9, 101–106. 14. Kroll L., Barnes J., Jones A. and Stein A. (1998). Cancer in parents: telling children. British Medical Journal 316, 880. 15. Bignold S., Cribb A. and Ball S. (1996). Families After Cancer: The Psychosocial Context of Surviving Childhood Cancer. London: Cancer Relief Macmillan Fund and The Department of Health. 16. Cooper E.T. (1984). A pilot study on the effects of the diagnosis of lung cancer on family relationships. Cancer Nursing August, 301–308. 17. Oberst M. and Scott D. (1988). Post-discharge distress in surgically treated cancer patients and their spouses. Research in Nursing and Health 11, 223–233. 18. Maguire P. (1981). The repercussions of mastectomy on the family. International Journal of Family Psychiatry 1, 485–503. 19. Hart K. (1986). Stress encountered by significant others of cancer patients receiving chemotherapy. Omega 17, 151–167. 20. Dennison A. (1996). Uncertain Journey. Newmill: Patten Press. 21. Cassileth B., Lusk E., Strouse B. et al. (1985). A psychological analysis of cancer patients and their next-of-kin. Cancer 55, 72–76. 22. Oberst M. and James R. (1985). Going home: patient and spouse adjustment following cancer surgery. Topics in Clinical Nursing April, 46–57. 23. Wortman C. and Dunkel-Schetter C. (1979). Interpersonal relationships and cancer: a theoretical analysis. Journal of Social Issues 35, 120–155. 24. Black D. (1998). Bereavement in childhood. British Medical Journal 316, 931–933. 25. Oberst M., Thomas S., Gass K. and Ward S. (1989). Caregiving demands and appraisal of stress among family caregivers. Cancer Nursing 12, 209–215. 26. Schumacher K. (1996). Reconceptualising family caregiving: family-based illness care during chemotherapy. Research in Nursing and Health 19, 261–271. 27. Gaynor S. (1990). The long haul: the effects of homecare on caregivers. Image: Journal of Nurse Scholarship 22, 208–212. 28. Carey P., Oberst M., McCubbin M. and Hughs S. (1991). Appraisal and caregiving burden in family members caring for patients receiving chemotherapy. Oncology Nursing Forum 18, 1341–1348.

The impact of cancer on the family 151 29. McCorkle R., Shegda Yost L., Jepson C. et al. (1993). A cancer experience: relationship of patient psychosocial responses to care-giver burden over time. Psycho-oncology 2, 21–32. 30. Stetz K. (1987). Caregiving demands during advanced cancer. Cancer Nursing 10, 260–268. 31. James N. (1989). Emotional labour: skill and work in the social regulation of feelings. Sociological Review 15, 4. 32. Rose K.E., Webb C. and Waters K. (1997). Coping strategies employed by informal carers of terminally ill cancer patients. Journal of Cancer Nursing 1, 126–133. 33. Benner P. and Wrubel J. (1989). The Primacy of Caring. Stress and Coping in Health and Illness. Menlo Park, CA: Addison–Wesley. 34. Hicks C. (1988). Who Cares: Looking After People at Home. London: Virago. 35. James V. (1998). Unwaged carers and the provision of health care. In Field D. and Taylor S. (eds.) Sociological Perspectives on Health, Illness and Health Care. Oxford: Blackwell Science. 36. Larson P. and Dodd M. (1990). Caring – issues and patterns for the family experiencing cancer. Sixth International Conference on Cancer Nursing, Amsterdam, pp. 177–180. 37. Darbyshire P. (1994). Parenting in public: parental participation and involvement in the care of their hospitalized child. In Benner P. (ed.) Interpretive Phenomenology. London: Sage, pp. 185–210. 38. Judd D. (1994). Life-threatening illness as psychic trauma: psychotherapy with adolescent patients. In Erskine A. and Judd D. (eds.) The Imaginative Body. London: Whurr, pp. 87–112. 39. Thorne S. (1985). The family cancer experience. Cancer Nursing 8, 285–291. 40. Northouse L. (1988). Social support in patients’ and husbands’ adjustment to breast cancer. Nursing Research 37, 91–95. 41. Hull M. (1991). Hospice nurses. Caring support for caregiving families. Cancer Nursing 14, 63–70. 42. Slevin M., Terry Y., Hallett N. et al. (1988). BACUP – the first two years: evaluation of a national cancer information service. British Medical Journal 297, 669–672. 43. Iqbal H., Field D., Parker H. and Iqbal Z. (1995). The absent minority: access and use of palliative care services by black and minority ethnic groups in Leicester. In Richardson A. and Wilson-Barnett J. (eds.) Nursing Research in Cancer Care. London: Scutari Press, pp. 83–96. 44. Harrison J., Haddad P. and Maguire P. (1995). The impact of cancer on key relatives: a comparison of relative and patient concerns. European Journal of Cancer 31A, 1736–1740.

45. Hileman J. and Lackey N. (1990). Self-identified needs of patients with cancer at home and their home caregivers: a descriptive study. Oncology Nursing Forum 17, 907–913. 46. Wingate A. and Lackey N. (1984). A description of the needs of noninstitutionalized cancer patients and their primary care givers. Cancer Nursing 12, 216– 225. 47. Harding, R. and Higginson I. (2003). What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliative Medicine 17, 63–74. 48. Hudson, P., Aranda S. and Kristjanson L. (2004). Meeting the supportive needs of family caregivers in palliative care: challenges for health professionals. Journal of Palliative Medicine 7, 19–25. 49. Fallowfield L. (1995). Helping the relatives of patients with cancer. European Journal of Cancer 31A, 1731– 1732. 50. National Institute for Clinical Excellence (NICE). (2004). Guidance on Cancer Services. Improving Supportive and Palliative Care for Adults with Cancer. The Manual. London: NICE. 51. Plant H. (1995). The experiences of families of newly diagnosed cancer patients – selected findings. In Richardson A. and Wilson-Barnett J. (eds.) Nursing Research in Cancer Care. London: Scutari Press, pp. 137–150. 52. Wright K. and Dyke S. (1984). Expressed concerns of adult cancer patient’s family members. Cancer Nursing October, 371–374. 53. Moore S., Sherwin A. and Plant H. (2006). Caring for carers: a prospective audit of nurse specialist contact with families and carers of people with lung cancer. European Journal of Oncology Nursing 10, 207–211. 54. DelVecchio Good M., Munakata T., Kobayashi Y., Mattingly C. and Good B. (1994). Oncology and narrative time. Social Science and Medicine 38, 855– 862. 55. Cull A.M. (1991). Studying stress in care givers: art or science? British Journal of Cancer 64, 981–984. 56. Hinds C. (1985). The needs of families who care for patients with cancer at home: are we meeting them? Journal of Advanced Nursing 10, 575–581. 57. Ransford H. and Smith M. (1991). Grief resolution among the bereaved in hospice and hospital wards. Social Science and Medicine 32, 295–304. 58. Wellisch D., Mosher M. and Van Scoy C. (1978). Management of family emotion stress: family group therapy in a private oncology practice. International Journal of Group Psychotherapy 28, 225–231. 59. Plant H., Richardson J., Stubbs L., Lynch D., Ellwood J. and Slevin M. (1987). Evaluation of a support group for

152 The experience of cancer cancer patients and their families and friends. British Journal of Hospital Medicine 38, 317–322. 60. Hudson P. (2004). Positive aspects and challenges associated with caring for a dying relatives at home. International Journal of Palliative Nursing 10, 58–65.

61. Hutton D. (2005). What Can I Do to Help? London: Short Books. 62. Finnegan W. (2005). Being a Cancer Patient’s Carer: A Guide. Oxford: Radcliffe Publications Ltd.

CHAPTER EIGHT

The impact of cancer on health care professionals Anne Lanceley

The study of the impact of cancer and cancer care on health care professionals and the nature of nurses’ strategies for working with people who have cancer shares a theoretical literature with other established investigations of therapeutic work, occupational development, and stress. However, these texts, concerned with professionalisation, role, competencies, and strategies, share a history of limitations. For researchers and practitioners alike, nurses’ therapeutic work needs to be understood in the context of the workplace and in terms not only of what the nurse practitioner does (forms of practice) but also of why (professional and individual purpose). Exploration of roles and functions, communications skills and competencies provides a useful starting point for understanding nurses’ therapeutic work in cancer care. However, models of therapeutic practice need to be developed, not only to allow for the integration of different perspectives from other involved professional groups, but also to offer an integrated social and psychological reconstruction of the nature of therapeutic nursing practice that take account of conscious and unconscious processes. This discussion is, in part, the product of research that began in 1991.1 The verbatim accounts and care strategy commentaries are based largely on transcripts of tape recordings collected for this research, of cancer nurses talking with people they were caring for in acute and home

care settings, and nurses’ own reflections on these conversations. The organisation of the chapter also owes a debt to this research, which acknowledges conscious and unconscious processes at work in nurses’ encounters with cancer, and explores fundamental issues about cancer nursing, such as what the distinctive aspects of interpersonal work are, how nurses use their personality on behalf of people they are caring for, what the role imposes, what the irrational elements are, the ways nurses communicate with patients and colleagues, what the nurse and patient may represent to each other, and how nurses manage their anxiety in the face of relentless psychic pain and suffering. The use and effectiveness of various nursing care strategies and approaches are considered alongside an evaluation of the impact the strategy may have on the nurse. This chapter deals with the theoretical, professional, and organisational context of cancer nurse–patient relationships. Drawing on examples from the UK and the US, it is concerned with the contentious issue of how far the concept of ‘therapeutic nursing’ is useful and appropriate to describe nurses’ work with people who have cancer, and their families. It explores the relationship between ‘nursing as therapy’, ‘counselling’, and more circumscribed ideas of cancer nurses’ work, reflected in specific health-promotional or support goals. Health care professionals’ attitudes and defences to cancer are introduced as a way of understanding

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communication patterns in cancer care settings. Methodological issues in researching and evaluating the nature and impact of the nurse–patient relationship in cancer care are considered.

The theoretical context of nursing in cancer care Within contemporary cancer nursing, the relationship between nurse and patient is perceived to be of central importance to emotion-focused interventions and the overall provision of quality care.2,3 This has not always been so and it is generally accepted that until recently the potential of nurse– patient relationships was limited. Medical diagnosis and treatment dominated cancer nursing’s ideology, and a person’s physical body represented the primary focus of nursing work.4 Peplau was perhaps the first to emphasise the potential therapeutic value of the nurse–patient relationship, maintaining, in particular, that nursing is ‘educative and therapeutic when nurse and patient come to know and respect each other, as persons who are alike and yet different; as persons who share the solutions of problems’.5 Her account conceives of the nurse as detached from the person being cared for, and although she suggests that professional closeness shares some features with the physical closeness and interpersonal intimacy found in non-professional relationships, its focus is exclusively on the interests and needs of the patient. Effectively, she distinguishes ‘professional closeness’ as non-reciprocal, demonstrated by the nurse who can ‘put herself aside and can bring all of her capacities and talents to bear upon the life of another person to the end that that person will grow a little, learn something new and, in effect, be strengthened in a favourable direction.’6 As Savage notes, the closeness that Peplau refers to is ‘not so much a matter of being closer to the person who is ill, but rather one of being “closer to the truth” of that person’s possible lifethreatening dilemma’.7 The cultivation of a special kind of detachment, demonstrating concern, competence, and interest, while maintaining an

emotional distance, is the hallmark of Peplau’s model. More recently, there is evidence of an alternative view, and the themes of the patient knowing the nurse as a person and working in partnership have received considerable attention by nurses as part of effective cancer nursing practice.8–11 In 1991, McMahon and Pearson published their important book Nursing as Therapy.11 This did not offer a definitive explanation of what nursing as therapy is, since the role of the nurse depends on many societal and health care factors that are far from static. Instead, the authors set out their developing ideas, founded on the belief that a certain form of nursing, which involves deliberate nurse decision making, has a powerful effect on the patient and promotes adaptation, healing, and health. Areas in which nursing was considered to have therapeutic potential were: • • • •

the nurse–patient relationship the interpersonal care environment providing comfort conventional and unconventional nursing interventions • patient teaching. The first two areas are the subject of this chapter. MacMahon and Pearson believe that the ideal nurse–patient relationship involves mutuality or reciprocity. They consider the ideas of Muetzel, who focused on three elements that coalesce in the encounter between nurse and patient: partnership, intimacy, and reciprocity.12 As key ingredients of a therapeutic nursing process, interaction between each pair of concepts generates three further concepts of atmosphere, spirit, and dynamics with concomitant defining characteristics. What Muetzel is attempting to clarify through her therapeutic practice descriptors is the nature of the nurse’s use of ‘self ‘ within the relationship. It is valid for the nurse and the patient to disclose their feelings and benefit from the relationship, and she argues that the nurse who is ‘self-aware’ has a special contribution to make in the relationship, and that this self-awareness is a necessity for

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the achievement and evaluation of a subjectively therapeutic encounter. As Muetzel puts it: ‘Being there’ is that intangible and paradoxically difficult and very simple essence of the dimension of reciprocity and intimacy. It is simple because it is in the desire for closeness of the philanthropic vocation ‘to help people’; difficult because a closeness that is mutually beneficial in a therapeutic relationship requires mature confrontation by the nurse . . . of the vulnerability of her own humanness [pp.106–107].

People with cancer demand and help to evoke a particularly sensitive use of the self by nurses.13 The value of ‘being with’ the patient or providing ‘existential presence’ has been explored by other writers. Halldorsdottir considers that there are five modes of being with another, each representing a qualitatively different degree of caring (Box 8.1).14 Box 8.1 Halldorsdottir’s ‘Five modes of being with another’14 • Life-giving – affirming the personhood of the other • Life-sustaining – acknowledging the personhood of the other • Life-neutral – where there is no effect on the life of the other • Life-restraining – which is detached from the true centre of the other • Life-destroying – which depersonalises the other.

Kitson15 and Ersser16 both explore the therapeutic dimension of nursing in their research, while Campbell describes the companionship that nurses offer as a ‘closeness’ that is neither sexual nor deep personal friendship, but a bodily presence; it involves a ‘being with’ and not just a ‘doing to’.17

A therapeutic nurse relationship The work of Carper18 and Benner and Wrubel19 helps in establishing a working definition of what a therapeutic nurse–patient relationship may be. Carper describes fundamental patterns of nursing knowledge (Box 8.2).18

Box 8.2 Carper’s patterns of nursing knowledge18 • The scientific knowledge of human behaviour • The aesthetic perception of significant experiences • A personal understanding of the unique individuality of the self • The capacity to make choices within concrete situations involving particular moral judgements.

She stresses that none of the patterns is sufficient in itself and that if: . . . the design of nursing care is to be more than habitual or mechanical, the capacity to perceive and interpret the subjective experiences of others and to imaginatively project the effect of nursing actions on their lives, becomes a necessary skill.18

The capacity of nurses to perceive and interpret the subjective experiences of others is the central tenet of the ‘helping role’ of the nurse as defined by Benner, who makes the fundamental point that ‘the ability to interpret concerns enables the health care provider to help people deal with their illnesses’.19 Since, in order to understand how someone feels, you must understand what they say, comprehending the meaning of the spoken word is a vital part of therapeutic nursing practice. It is worth making a distinction between an identical expression of anxiety to a close friend during a ‘heart-to-heart’ and that which can take place between a nurse and the person being cared for. The difference lies in the imaginative, purposeful, and strategic use the nurse makes of the ‘data’ the person has offered. The nurse may use this information to facilitate further disclosure or, if necessary, delay it. The heart-to-heart with the friend may be enormously helpful but is very different from a professional relationship, in which data ‘about’ the person and the experience of ‘being with’ them endorse each other and help the nurse to structure her interventions. The nurse practising therapeutically will create an emotional climate that will enable the person to explore their thoughts and feelings about their cancer illness progressively, to review problems and difficulties, and to have a sense of self-mastery.20,21

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These theoretical ideas concerning the ideal therapeutic relationship are helpful in conceptualising the nature and range of relationships that may exist for nurses and the association between these and the experience or expertise of individual nurses. However, they do not consider the impact of the workplace organisation and ethos on nurses’ professional relationships. Since they also overlook the collective nature of nursing work, any identified failure of the nurse to create a therapeutic relationship would rest firmly with the individual nurse.

Professional and policy context UK health policy over the last 15 or 20 years can be seen as the bringing in of successive waves of rationality, with the government aim of calling various groups of health care professionals to account.22 Rational approaches to managing health care were sought from within private sector organisations, a search that culminated in the introduction of general management and the ‘internal market’ into the health service,23 ideas which underpin recent cancer and palliative care policy.24 Some claim that the impact of these changes on nurses’ professional activity is minimal,25 while others consider that moves such as the incorporation of professionals into management roles is an effective way of controlling their activity and thinking. The professional is a member of a team, and beyond that an employing organisation, and so subject to the rules, plans, and priorities of that organisation. That accounting system initiatives, such as resource management, may have far-reaching effects upon both the practice and values of nurses has been noted by Bloomfield et al.26 These systems develop standards of behaviour such that ‘normal’ practice can be not only defined, but also measured, and deviations and outcomes noted. What is also implied is that what is rendered visible, measured, and rewarded gains legitimacy. Conversely, that which is not recognised by the formal system may not be considered legitimate and consequently not rewarded. This is exactly the conclusion James reached about the lack of value attributed to emotional care by nurses.27

This raises several problems for the emotionfocused work of nurses where there can be no unequivocal answer about ‘success’ or about whether a particular intervention is ‘good’. The nursing strategy will be based on value and choice – without the freedom of that choice, no therapy based on self-mastery could ever hope to succeed. The very nature of the intervention makes it problematic to evaluate. The emotion-focused work of cancer nurses received a significant policy boost with the National Institute of Clinical Excellence guidance on cancer services, particularly the document Guidance on Cancer Services: Improving Supportive and Palliative Care for Adults with Cancer.28 The aim of this 200-page document is to define a service model to ensure that patients with cancer, their families, and other carers receive support to help them cope with the diagnosis of cancer and its treatment. While not wishing to detract from the overall benefits of the guidance, it is important to our discussion that the guidance outlines services that are designed to react to psychological distress when it is identified. In other words clinical care is provided as a reactive service. In such a model, varying interventions are provided in relation to the level of distress identified in the person with cancer. There is little room in such service models of care for the prevention of psychological distress in people affected by cancer or for fostering ways in which individuals may be actively supported to manage their worry and distress. Once again, what is rendered visible and can be measured gains legitimacy. A reorientation of thinking is needed to recognise this, also that the type of service provided may in fact be a significant determinant of the level of distress that patients experience. The roots of the managerialism described above are traced to the growth of bureaucracies by Davies who comments upon the way that formality and distance are not only valued within bureaucracies but seen as the only route to rational decision making.29 Traynor examines the impact of this managerial rationality on nurses’ work.30 In his research study he explores the value systems of the new general managers and the nursing workforce of

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Commentary 8.1 A possible reading of the nurse’s comment (after Traynor30) The nurse sets the scene, telling of the intrusion into nursing of a contrasting and alien set of values. While the way she lists the characteristics of this new value system – ‘customer, computer, audit and budget’ – are not intrinsically undesirable, we experience them as such, particularly when contrasted with the traditional and human terms ‘empathy’, ‘bedside manner’ and ‘care’. Perhaps by her use of the verb ‘replace’ and the words ‘being replaced by’ rather than ‘are replaced’, the nurse is enacting in words a passivity and powerlessness that she feels with her profession. As a consequence, we are encouraged to see the nurse as the victim in this situation. ‘Coming in’ identifies the business orientation as a fad and reinforces the idea of an inappropriate intrusion, with the nurse as the victim. The third sentence can be understood in a number of ways. Its metaphor is one of the body. A possible reading is as a plea for a body (nursing), which is at the moment divided against itself to become integrated; for eye and hand to work together. Upper body organs are traditionally associated with rationality and so they are here, with ‘thoughtful eyes’ needing to combine with the lower organs, hands. Atypically these lower organs are given a privileged position in the nurse’s account as they are associated with the physical world of practical action, ‘caring for our patients’. This is, at once, the end purpose of nursing and of her statement. The whole may be regarded as a desire for balance and integration; to reconnect and reground the rational, non-physical aspects of the organisation and profession that are becoming dominant and disconnected from physical, practical concerns.

four first-wave NHS community-based trusts through analysis of their talk. The managers’ talk emphasises quantities, levels, numerical patterns; in short, it is disembodied knowledge, while embodied meaning and a language of closeness and human values haunt the nurses’ talk. The conflict experienced by the nurses is distressingly evident, as illustrated by the comments of one staff nurse in a community hospital: I’m dissatisfied with ‘simple is best’ attitude in nursing being replaced by ‘let’s communicate’, ‘high tech’ attitude coming in. Empathy, bedside manner, care.

These words are being replaced by customer, computer, audit, budget. Why don’t we start looking down at our hands with our thoughtful eyes and using common sense and intelligence; use those hands practically, to care for our patient?30

Traynor’s view is that organisational strategies, which have emphasised continuity of care, camouflage extensions to the power of management control over the professional activity of nurses. However, the profession has responded positively to these developments. One response may reflect nursing’s unique version of professional autonomy, characterised by moral agency and self-sacrifice. The commitment to continuity of care is clearly expressed in what has been referred to as ‘the new nursing’,31 typified by primary nursing, which explicitly aims to transform relationships with patients and promote their participation in care. As such, primary nursing is one example of an organisational mode in which communication is viewed as a central and legitimate aspect of nurses’ work.32 Underlying the ‘new nursing’ is a belief that the relationship between nurse and patient has the potential to be therapeutic and central to the process of recovery. Professional debate about specialist and advanced practice roles also drives theoretical discussion and practice initiatives concerning the therapeutic nature of cancer nursing. Questions that have arisen include whether it is possible for all nurses in cancer care to develop therapeutic relationships with the people in their care; what sort of environment or ‘culture’ is most conducive and supportive of this way of working; and what part might be played by an advanced nurse practitioner. The role of advanced practitioner in cancer care encompasses more than expert nursing practice. Although there is no consensus view of such posts, they are generally considered to be multidimensional.33 The final results of Manley’s action research project identified the subroles of the consultant nurse as: nursing practice; consultancy; management processes; and leadership. Manley argues that an integration of these roles is needed to promote and develop clinical nursing from clinical to stategic and policy levels, while

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simultaneously creating and sustaining a culture in which nurses and nursing strive for more effective patient-centred services.34 Manley highlighted not only the knowledge, skill, and expertise needed within identified subroles, but also the personal qualities and processes by which the advanced practitioner/consultant nurse fulfils each subrole (see Figure 8.1). These bear remarkable resemblance to qualities attributed to counselling relationships.21 Corner takes up the debate and recasts the dimensions of the advanced practitioner role into ‘cancer nursing as therapy’.2 This, Corner suggests, has the potential to operate on four levels to effect radical reconstruction of care, cancer services, and wider health care environments, so that they are more patient focused and offer ‘nursing as therapy’ as an integral part of cancer care. These levels include: • fundamental knowledge and theory generation for therapeutic practice

KNOWLEDGE, SKILL and EXPERTISE within integrated subroles

• therapeutic interventions for individuals or problems • developing and changing health systems or environments • critique and reconstruction of care from a societal perspective. Crucial to the accounts of Manley and Corner is the idea of radical change and facilitation of a ‘transformational culture’, which enables the therapeutic work of nurses. The broad idea of ‘cancer nursing as therapy’ outlined above, is offered as a contemporary vision of the necessary professional and organisational context for the concerns of this chapter, which are the emotion-focused interventions of cancer nurses working in one-to-one relationships with patients. It is for a variety of reasons that the nurse–patient relationship has come to be redefined. However, the extent and nature of the change required to realise the vision are likely to be immense.

CANCER CARE CONTEXT

(Nursing practice; research and evaluation in practice; practice development; education and learning in practice; consultancy; management process and leadership)

CONSULTANT NURSE PERSONAL QUALITIES and ATTRIBUTES (Being: patient centred; available; accessible; generous and flexible; enthusiastic; self-aware and attuned to others; a collaborator and a catalyst; having a vision for nursing and health care; strategist and demonstrating political leadership; and academic criteria)

PROCESSES (Transformational leadership, processes of emancipation, practising expertly as practitioner, researcher, educator, consultant and practice developer)

Prerequisite Organisational authority attributed to post

PROCESS OUTCOMES TRANSFORMATIONAL CULTURE

•Empowered staff •Practice development •Workplace context

EFFECTIVE PATIENTCENTRED SERVICES

Figure 8.1 Framework for the concept of the consultant nurse and its relationship between context and outcomes. Adapted with permission from Manley K. (2002). Refining the consultant nurse framework: commentary on critique. Nursing in Critical Care 7, 84–87, Blackwell.34

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Organisational context Glaser and Strauss were the first to expose the profound emotional basis for the social organisation and context of care in relation to people with cancer and the dying.35 In their important study they not only identified the troubling reality of awareness categories in relation to a dying person but also described ways in which knowledge about diagnosis and prognosis was used to disallow or control feelings. James develops this theme of emotion management in her examination of the disclosure of a cancer diagnosis.36 She describes the management of emotions at this time by lay and professional carers, noting that many manage by denying rather than engaging with emotions. She attributes differences in emotion management to different levels of involvement with the feelings associated with the cancer and competing forms of status and knowledge. These then influence the organisational and interpersonal mechanisms used to manage the feelings, such as the use of particular kinds of space and time, more or less public encounters, denial of the emotion, limiting the information released, formal and informal disciplinary rules, gender-divided labour and, most significantly, senior staff setting the context, routines, and rituals within which other staff and clients can express their anxieties and feelings. In her study of nursing practices in a London teaching hospital, Isabel Menzies noticed that, far from responding in contextually sensitive ways to particular patients, nurses were task centred and, for example, awoke people in their care to give them drugs, regardless of need. Also, finding that nurses rotated frequently between wards, Menzies argued that these organisational procedures and practices became an end in themselves. They were rituals that were not designed to help people who were hospitalised, but rather enabled the nurses to contain the anxiety of working with the sick and dying.37 The nurses did not have to think about what they were doing and, by not thinking, they could avoid feeling anxious. Menzies called such rituals social defences. Menzies felt that ‘although by the very nature of her profession the nurse is at considerable risk of being flooded by intense and unmanageable

anxiety’, the nature of nursing did not, by itself, account for the high levels of anxiety apparent in nurses. The very techniques used by nurses to contain and modify the anxiety appeared to constitute part of the problem. Not recognising the individual needs of people helped detachment, and led to minimising the mutual interaction of nurses with people in their care, since this might lead to ‘attachment’. This trend was reinforced by an implicit operational policy of ‘detachment’, where the assumption was that a nurse would not mind moving from ward to ward, or hospital to hospital, without notice. The pain and distress of the moving, of breaking stable and continuing relationships, are implicitly denied by the system, although often stressed personally by people (including senior nurses who initiate such moves) within the system. In addition, nurses were encouraged to deny any disturbing feelings that arose within relationships. Those nurses facing difficulties were reprimanded rather than supported. It is arguable that these social defence systems do not exist in cancer care today. If task allocation protected the nurse from anxiety, new organisational modes stressing continuity of care have stripped this defence away and pose new, personal challenges for nurses. There is compelling evidence to suggest that cancer nurses and their professional colleagues have generated various new ‘systems’ to organise their own work, the care environment, and cancer services in ways that may reflect a spectrum of techniques to defend against, contain, or modify what Menzies calls ‘the unmanageable anxiety’ of their work. Lawton’s detailed ethnographic study of the care of dying patients in hospices and day care provides complex examples of this.38 Lawton describes how the suffering that patients actually experience is masked and can be hidden away in inpatient facilities and professional idealism that elevate the dying to heroic status. A study of hopelessness and how it is represented on a leukaemia ward is another example of a defensive system. This study revealed that ‘hope work’ was conducted within an objectifying medical frame as opposed to the person’s own frame of reference. Not only was the legitimacy and credibility of the medical version of reality maintained, but

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emotionally charged conversations were largely avoided.39 Another interesting example is research that was carried out on two wards where a high proportion of people with gastrointestinal cancers were nursed.40 One ward used a primary nursing approach and the other patient allocation. The aim of the study was to explore ways in which nurses managed interactions and, in particular, their ‘closeness’ or intimacy while caring for people. Data revealed that nurses managed deep, close, and consistent relationships with them, not only by expressive behaviours including the use of touch, body posture, and humour, but by transforming the ward into a symbolic space in which the relationship became analogous with family relationships. Savage deduces that reconstructing the context of care in domestic rather than institutional terms enabled the nurses to deal better with the many anxieties and ambiguities of emotional closeness inherent in the ‘new nursing’. The ‘family’ or the ‘home’ were not the only observed models for providing a context of care. It seemed that ‘camaraderie’ in the nurse team offered an alternative. Another relevant finding from Savage’s study is that the realisation of contexts for care deemed to have a therapeutic potential is less dependent upon the organisational mode of nursing on the ward than on the interrelationship of this with specific local conditions of the hospital infrastructure including resource allocation, the approach of general management, and the attitudes of other members of the health care team. The work of Smith supports this.41 The point is that feelings and how they are managed contribute to and reflect the structure and culture of the cancer care setting.42 It is useful to consider communication patterns in this light.

Communication patterns in cancer care settings Communication in cancer care settings is characterised by the avoidance of difficult or painful topics and misunderstandings that arise between

the person who has cancer, their family, and the involved health care professionals.43–45 Sociologists attribute the cause of avoidance and misunderstandings to the nature of health care professional–patient relationships, which are largely dependent upon the power inherent in professional expertise and specialised knowledge.46 A considerable amount of the research on doctor–patient and nurse–patient communication in cancer care has been conducted specifically to analyse and to criticise the means, methods, asymmetry, and humaneness of the relationships.47 The language doctors use in encounters with people with cancer has been shown repeatedly to reflect the non-egalitarian nature of the relationship.48,49 There is recognition from within the professions of the huge complexity of communicating with people who have cancer and their families.50,51 Almost 30 years ago Souhami highlighted the particular difficulties for doctors who often have to deal with probability rather than certainty of treatment outcome, and repeatedly may be the bearers of bad news. The doctor also has to contend with the high expectations of team members, that these encounters will be good and that he or she will ‘get it right’.52 It is suggested in this book that cancer illness in Western biomedical culture is itself dependent upon this relationship, the encounter with the expert medical oncologist, radiotherapist, or cancer geneticist, for its definition. This emphasises the point that, whatever else it is, cancer illness exists as a social phenomenon, constructed through the interaction of the person with his or her relatives, the doctor, the nurse, and society at large. Some studies of doctor–patient interaction have focused in recent years on problems of communication often caused by conflicting notions concerning the nature of this relationship.53 Mishler considers the root cause of these difficulties to lie in the asymmetrical nature of medical consultations and presents the analogy of a struggle between voices: on the one hand, the ‘voice of medicine’ and on the other, the ‘voice of the life-world’ representing, respectively, the ‘technical–scientific’ assumptions of medicine and the natural attitudes of ‘everyday life’.54

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According to this model, the doctor is seen as pursuing a line of talk determined almost exclusively by biomedicine, which is often at odds with the person’s own view, representing what Mishler terms ‘life-world contexts’. Since the talk is dominated by the voice of medicine, argues Mishler, any contribution from the voice of the life-world is regarded by the doctor as an interruption. Conversely, any interruption by the voice of medicine when the person is speaking is not an interruption at all, but a return to reality, that is to the dominant medical techno-rational reality. The medical voice is clearly indicated within consultations by the typical patterns of: Doctor: question Patient: response Doctor: assessment/next question. The tendency of doctors to use closed rather than open-ended questions serves further to maintain the doctor’s control of talk. This in turn strengthens the biomedical model as the framework of the talk and permits the doctor to carry out the medical tasks of diagnosis and prescription, while avoiding discussion of the person’s feelings and individual response to their cancer illness.53 This bias towards the ‘voice of medicine’ prevails in cancer care today, which is surprising considering the emphasis since the 1970s on the emotional needs of people with cancer, influenced in particular by the pioneering work of KublerRoss,55 and also the beliefs about the ultimate benefits of: • adopting a client-centred approach of openended questions • explaining medical agendas • the use of the person’s own words in asking further questions • listening with minimum interruption to engender collaborative models of care based on desired right choice and self-determination for people with cancer.56 It may be that the coercive strength of medically orientated styles of talk is so entrenched in social attitudes that the style has become naturalised. Indeed, when ill, many people would feel

uncomfortable without the asymmetry of the relationship with their doctor. Silverman suggests that despite their pleas for humanism and equality, proponents of the clientcentred approach are unwittingly reinforcing the central strategy of power in the doctor–patient relationship.46 Attempts to conduct the relationship along the lines of an equal partnership would only be a simulation and would leave intact the essential nature of the power imbalance, which is based upon professional expertise and specialised knowledge. This situation is further complicated by the fact that recent technological advances mean that often oncologists and radiotherapists are working at the fringes of their own knowledge, and the consultation is therefore forever threatened with becoming the domain of ‘another expert’, in which any progress towards interactional symmetry would have to begin again. Other sociologists, in assessing the power relation within the medical interview, have been heavily influenced by the work of Foucault,57and perceive the client-centred approach that has come to dominate first progressive and now mainstream thinking in cancer care, as little more than a placebo designed to obscure the real ‘treatment’ of an all-encompassing form of surveillance in which the medical gaze can roam freely.58 They regard the arguments of the supporters of this approach as tenuous, relying as they do on the belief that liberation from the tyranny of conflicting and unequal power relationships can somehow be achieved by an incitement of the person to talk and by encouraging the doctor to listen. These writings and research evidence present health care professionals with an impasse that must be negotiated if any meaning or credibility is to be salvaged. Silverman suggests that there is a way out and that it lies in individual practitioners rejecting pre-established roles and evading stereotyped talk with people, but instead constructing their own dialogues with them.46 Nevertheless, stereotyped interprofessional relationships account for some of the patterns of communication in cancer care. Nurses perceive that they often do not have sufficient clinical information to respond to the questions that are posed by people who are anxious about their illness, and that, even if they had, their own and

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others’ expectations of their role may preclude further discussion. According to some researchers, the positive effects of a good communication climate, in which there is open communication within the team, stimulate the ‘therapeutic’ interventions of individual practitioners, lead to an attitude of openness to feelings and have a beneficial effect on team members’ mental health.59 Earlier work revealed that individual nurses take fewer risks in emotionally hazardous one-to-one conversations with people they are caring for than as members of groups.60 Certain characteristics of the group facilitate risk taking and these include: • the extent to which risk taking is a norm of the group • the extent to which exchange of feelings is possible • the extent to which members of the group support each other • the extent to which responsibility can be shared. Results from these studies caution against solutions aimed at improving the emotional focus of cancer care which are confined to the organisation of the nursing team or interventions solely reliant upon nurses. Improvement will depend on changes in working methods and working relationships between nurses, doctors, and management. There is growing evidence not only that the expression of feelings may affect someone’s ability to adjust to their diagnosis of cancer and cope with treatment, but also that such disclosure may also influence recurrence and progression of disease.61 Cancer nurses acknowledge this and also recognise the power of communication to arouse or assuage the fear that often accompanies cancer.62 Yet numerous studies reveal that patterns of nurses’ communication are dominated by routinised, stereotyped and overtly controlling forms of communication, which serve to maintain the conversation at a superficial level. Avoidance of potentially difficult and emotional discussions of poor prognosis and death was identified by Glaser and Strauss in the seminal work, Awareness of Dying, as being surrounded by a ‘conspiracy of silence’.35 They identified various

forms of this, each dominated by secrets and silence: ‘closed awareness’ existed when health care professionals chose not to tell someone of their poor prognosis and impending death; ‘suspected awareness’, was where the patient has a hint of the truth; and in ‘mutual pretence’, both parties, the health professionals and the patient, knew but chose to remain silent.35 Although there have been dramatic changes in the behaviour of health professionals with regard to telling someone their cancer diagnosis and prognosis, so that by the late 1970s most doctors said that they informed patients,63 the reality is that uncertainty often exists about what has been said to whom and when. This affects team communication and requires constant vigilance by all members of the team. Parkes recognised that questions may be asked of nurses that would not be asked of a doctor because a nurse can be more easily disbelieved if the information about the illness is given when someone is not ready to know.64 He acknowledged that the systematic investigation of such ‘defended talk’ is very difficult. The idea of ‘defended’ talk introduces an additional explanation for the patterns of communication existing in cancer care settings. This concerns the attitudes and levels of anxiety and the stress experienced by health care professionals working with cancer patients, and includes the patient as one who can avoid and deny distressing thoughts and feelings as effectively as a nurse or doctor, thus ‘blocking’ professional help.

Health care professionals’ attitudes and defences to cancer Repeated reports to the health ombudsman of insensitive, inattentive treatment, particularly of people who are dying and their families, have led to investigations into the importance of health care professionals’ attitudes in the care of cancer patients and also to investigations of the levels of stress experienced by staff. Attitudes

There is reliable evidence that nurses hold stereotyped, negative attitudes to cancer, which

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significantly affect their behaviour and communication with people who have cancer,65,66 Some more experienced trained nurses hold a more optimistic view of cancer, but they are in the minority. Elkind found that most nurses considered it at least sometimes true that cancer treatment can do more harm than good and that they were pessimistic regarding the number of deaths caused by cancer, sharing the same fears as the general population.67 The association of cancer with death and suffering held by many individuals is carefully analysed by Stacey, who explores the cultural meanings of cancer.68 From her analysis, cancer emerges as a symbol of death and suffering, and the societal battle against cancer is then seen as the struggle to resist acceptance of the inevitability in life of death, decay, and decomposition. These overall trends play a significant role in the development of attitudes amongst individuals. One well-documented danger in negativeattitude, stereotype-governed health care professional behaviours is that people who have cancer may ‘become’ the stereotype.69 For example, nursing staff guided by a strong prior belief that a diagnosis of cancer is hopeless and that all who have it suffer and die from their disease may, through their conversational approach, instill that belief in the person themself. A study by Mood and Lick designed to examine nurses’ attitudes to the terminally ill provides some evidence for this.70 In their study, increased use of negative words (e.g. no, not, never, nothing, none), and substitution of the impersonal pronoun ‘it’ for death, were found in discussions of death as opposed to other topics. They concluded that such subtle encoding of the nurses’ own fear, anxiety, and negative attitudes to death significantly altered the quality of the message communicated to dying people and their families, and would confirm feelings of helplessness and hopelessness. Stress

Since the early work of Vachon et al.,71 there has been a recognition that health professionals who work closely with people who have cancer can experience stress from their work, arising from the deterioration and death of patients, and from

dealing with the emotional distress.72 In a recent Delphi study to identify cancer nursing research priorities in Northern Ireland, the top priority areas were psychosocial issues, and professional issues relating to nurse burnout, and stress.73 Reviews and research studies over the last 15 years, focusing on stress and burnout in those caring for people with cancer, have used quasiexperimental designs to attempt to delineate the specific variables of stress within predetermined categories, using a variety of measurement scales.74–76 For example, Kent et al. examined the relationship between oncology staff’s perceived success in helping patients and their levels of stress using the Maslach Burnout Inventory (MBI), the Hospital Anxiety and Depression Scale (HADS), and intention to leave their current post.77 Isikhan et al. relied on self-report questionnaires, a Job Stress Inventory and a Ways of Coping Inventory in their study to determine in health care professionals working with cancer patients the factors influencing stress and the strategies used to cope with it.78 Sources of stress consistently identified are: • feeling overloaded with work and the effect of this on home life • poor management support and resource/staffing limitations • dealing with patients’ suffering • death and dying • relationships with other health professionals • lack of experience. Working with cancer may force health professionals to face their own mortality and that of their family and friends. In addition, the conflict between the curative goals of medicine and the reality that many people will not respond to treatment in the long term, can lead to tensions between cancer care team members, as well as death being seen as a personal failure.79 In palliative care, working with people who have incurable disease and who are dying is thought to barrage health professionals daily with suffering and tragedy.80 As a result of the particular demands made of them, cancer health professionals are perceived to experience high levels of job stress and to be at

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risk of developing work-related distress or compassion fatigue.81 As highlighted earlier this may have repercussions for interprofessional work relations and organisational efficiency within the cancer care setting.82 However, according to this body of research, levels of distress do not appear to be uniquely high for those working with cancer compared to other health care professionals. Two large surveys conducted by Ramirez’ research group interestingly contradict these results. In 1995 Ramirez et al. conducted a survey to assess the mental health of UK hospital consultants.83 A 27% prevalence of psychiatric morbidity among 882 repondents from five specialties: gastroenterology, radiology, surgical oncology, clinical oncology, and medical oncology, was reported. This prevalence was markedly higher than the 18% of the general population. Ramirez decided to re-assess the situation in 2002 because much had changed in the NHS.84 Additional funding for health care had been committed and the consultant workforce had expanded. However, patients’ expectations regarding their care have risen and clinicians face new pressures, which include: implementation of new policies to drive service improvement, including the NHS Cancer Plan,85 and associated National Service Framework; introduction of targets; formal procedures for consultant appraisal; and changes in clinical governance. In essence Ramirez et al. resurveyed their initial study cohort and added a new cohort, from the same five specialties, of consultants who were new to the grade since 1994. Psychiatric morbidity was estimated with the12-item General Health Questionnaire (GHQ-12), emotional exhaustion, the principal component of burnout, was assessed by the MBI, and job stress and satisfaction were measured by a study-specific questionnaire. The proportion of consultants with psychiatric morbidity rose from 27% in 1994 to 32% in 2002. The prevalence of emotional exhaustion increased from 32% in 1994 to 41% in 2002. Multivariate analysis showed that increased job stress without a comparable increase in job satisfaction accounted for the decline in mental health, which was especially marked in clinical and surgical oncologists. Ramirez et al. conclude that the reconfiguration of cancer services driven by the Calman–Hine Report and NHS Cancer Plan, while

benefiting patients, might contribute to the increased job stress without similar, and thereby protective, increased job satisfaction for clinical oncologists and surgical oncologists. The implications of these findings for care, in addition to the personal suffering of health professionals, point to the need for action to reduce burnout and stress among those professional groups, and to support them and enhance their job satisfaction. It is difficult to know what to make of the counter-intuitive findings of research that fails to identify dealing with fatal illness and death as a major source of job stress among cancer professionals.86–88 Perhaps the explanation lies in the way in which stress is conceptualised by these researchers and the influence this has on study design. Though it is often not explicit, in most cases a psychological approach to stress underpins research studies. Lazarus is the main exponent of this.89 He maintains that stress occurs when there are demands on the individual that he or she cannot cope with or adjust to. Stress arises when the individual perceives and evaluates this situation as threatening. The model incorporates the concept of appraisal and reappraisal, together with the transactional view that stress can only be defined by the relationship between the individual and his or her environment. The premise of this model is that there is a ‘right’ way to cope and manage thoughts and feelings, and a range of ‘appropriate’ responses to stress. What this model largely omits, argue Benner and Wrubel, is the view that stressful experiences and coping options are constituted by a person’s unique involvement in a situation and their skills, concerns, meanings, particular history, and anticipation and projection of themselves into the future.19 One explanation for the counter-intuitive results could lie therefore in the mechanistic approach to the experience of stress in which an individual’s stress is measured by a variety of tools at a single point in time without thought for the changing nature of stress or the societal or organisational context of it. Irrational processes highlight another possible limitation of classic stress theory. Theorists such as Lazarus or the more sociologically orientated

The impact of cancer on health care professionals 165

Pearlin90 have argued that all individuals face continuing stressors and that coping strategies and cognitive reappraisals are mechanisms for reducing stress. But because these theorists do not link the experience of stress to people’s feelings of anxiety, they may have posed the issue of stress too narrowly and focused their solutions too narrowly on rational means. When anxiety intrudes, rational thinking is distorted by irrational processes. For example, nurses in many oncology units ‘fight’ chronically with doctors over treatment policy, each blaming the other for the gap between expectation and treatment outcome. Because they feel anxious, they project their sense of blame and failure outwards, often scapegoating the person they need to work closely with, to reduce the stress they face. Psychodynamic concepts, which highlight how people use one another to stabilise their inner lives and feelings and then how these psychodynamic processes within people help to shape the relationships between them, may be particularly helpful in understanding the stress health care professionals experience when working with cancer patients.91 The ideas may go some way to providing an explanation for the low levels of communication identified in some research studies between cancer care professionals and patients, and the apparent endemic verbal ‘blocking’ behaviours. Defences

Sometimes aspects of ourselves and our experience conflict with our consciously held ideals. These aspects of ourselves and our experiences cannot be easily assimilated into our conscious view of ourselves because of the anxiety or psychic pain they arouse. We may find it easier to function by suppressing and denying difficult or painful experiences and memories.92,93 When our work brings us into contact with cancer, it can be a very powerful experience because those in our care may be attempting to relieve their internal pains and distress by externalising them, and requiring us to contain and carry aspects of these. The difficulty for us is that we too have our own internal processes to contend with, such as our own unresolved conflicts and impulses, particularly those to do with death and destructiveness.

For brief periods we may be able to tolerate considerable anxiety and bear considerable mental pain and depression, for instance following a bereavement. Alternatively, we may try to ward off such emotional discomfort by employing a number of defence mechanisms (see Table 8.1). The defences work through the processes of splitting, projection, and introjection.94,95 Menzies’ interpretation of how nurses protect themselves against the anxiety caused by primitive feelings and impulses elicited by physical and psychological closeness to people in their care illustrates these processes.96 Menzies observed that nurses feel the anxiety and stress of helping sick people who might die and that they often engaged in physical care that by ‘ordinary standards is distasteful, disgusting and frightening’. The nurses are unable to balance and integrate powerful and opposing feelings of compassion for the ill person and revulsion at their physical state. Unconsciously, the nurses welcome depersonalised care practices as a way of relieving themselves of contradictory feelings and of keeping the good feelings separate from the bad ones. By splitting off their sense of personal authority and agency from their own experience and projecting it outside – onto the ritual of drug administration, for example – they relieved themselves of the anxiety of the patient’s experience. The nurses also psychologically took in, or introjected, the new authority of the rituals to justify their depersonalised relationship to the people in their care. Thus, through the linked processes of splitting, projection, and introjection, the nurses lent their individual and collective authority to ritual care, which in turn authorised them to behave in a depersonalised way. The milieu and thrust of present-day cancer care challenges the defences of health care professionals by everincreasing complex combination treatments, long illness trajectories, new technologies, increased specialisation and possible fragmentation, consumer expectations, and competition for patient contracts and research funds. As the risks of work grow, anxiety increases as well. Menzies’ work and other studies by psychoanalysts suggest that health care professionals may be deeply ‘defended’ against the stresses and anxieties of caring for people who have cancer. In a classic

166 The experience of cancer Table 8.1

Defences against anxiety commonly encountered in everyday clinical work

Denial Suppression Repression

Splitting Projecting Projective identification

Reaction formation Rationalisation Psychosomatic reactions Phobic avoidance Displacement Regression Sublimation

A defence mechanism by which either an aspect of the self is denied or some painful experience is denied. A conscious attempt to forget or deny and to avoid thinking about something. An idea may be unconsciously repressed owing to its unthinkable nature. It may be an idea or feeling that conflicts with our view of ourselves and what is acceptable. It is prevented from coming to consciousness. Involves separation of good and bad aspects of the self and others, or between good and bad feelings. Externalising unacceptable feelings and then attributing them to others or an object. Projecting not only feelings but important aspects of the self onto others so that that person feels and owns qualities and impulses that are otherwise not their own. Going to an opposite extreme to obscure unacceptable feelings, e.g. excessive calm to hide panic. Justifying an unconscious impulse or giving a good reason for something but it is not applicable to the situation. Unacceptable feelings may be converted into physical symptoms. Avoiding situations that arouse unpleasant feelings. Being too afraid to express feelings to the person who provoked them and deflecting them elsewhere. If we feel unable to cope we may regress to more childlike and dependent ways of behaving. Unconscious drives are allowed partial expression in modified, socially acceptable, even desirable ways.

paper entitled ‘The ailment’, Main considers that our choice to work with cancer has deep personal reasons and that it has abiding unconscious determinants, such as the need to heal sick parts of ourselves.97 There is therefore a range of feelings that may invade us as we work, including anxiety, guilt, depression, and compulsive reparative wishes. Rather than being aware of our defences, which are developmentally normal and protect us from excessive anxiety, and ensuring they are reasonably flexible to enable us to remain open to distress, our defences can become immovable barriers to thoughtful, responsive practice. Institutional cancer care settings may actively contribute to this, since to keep the institution functioning and individual cancer care professionals functioning within it, time and other constraints only permit working at a superficial level. This provides an alternative reading to the mainstream studies of stresses and burnout among cancer care professionals, in which the comparatively low levels of stress found may be an indicator of the extent and effectiveness of staff’s defences

against the anxiety of their work, rather than an accurate indicator of their stress.

Methodological issues in researching and evaluating the nature and impact of the nurse– patient relationship in cancer care Research is needed that will not only enhance understanding of the complex processes of communication between nurses and people with cancer, but also provide evidence of the value claimed, and indicate the nature of support and education required, to facilitate this therapeutic opportunity. Almost all nurse–patient communication research to date has been carried out with a positivist psychological orientation. One consequence of this has been the focus on quantitative approaches concerned with the attributes of nurses or an enumeration of their communication skills (see Table 8.2). There has been a tendency in this research to

The impact of cancer on health care professionals 167 Table 8.2 Examples of research exploring cancer nurses’ practice in comprehending and responding to patients’ concerns Study

Method

Findings

Hunt (1989)99

Extended case study within an ethnographic framework. Tape recordings of nurse–patient conversations over 3 months.

Wilkinson (1991)47

Tape-recorded nurse–patient interactions followed by semistructured interviews with the nurses. Coding frame used to categorise ‘blocking’ or ‘facilitating’ interventions by the nurse. Tape-recorded nurse–patient conversations. Nurse–participant reflective interviews. Discourse analysis, including analysis of figurative language.

Patients did not express wishes to discuss their feelings. Processes that promoted expression of feelings, the meaning of death or spiritual need were limited. 54% of nurses’ verbal behaviours found to be ‘blocking’; psychological and emotional needs assessment largely ignored by nurses.

Lanceley (1995)1

Heaven and Maguire (1996)100

Booth et al. (1996)98

Jarrett and Payne (2000)101

Pre-test tape recordings of an assessment interview and nurses’ list of patient concerns. Researcher–patient interview and administration of HADS and selfassessment scale; 10-week training programme; 9-month nurse post-test. Prospective study of nurse–patient taped interactions before and after training and 9 months later. Researcher–nurse semistructured interviews; questionnaire re nurses’ perceived level of support. Ethnomethodological study. Taperecorded nurse–patient interactions. Nurse and patient participant accounting interviews. Communication skills analysis.

Patients expressed their feelings to nurses. Conversations were jointly constructed. Nurses’ response to patients’ emotional expression was highly variable. The impact on nurses of cancer patients’ expressions of feelings has been underestimated. Study revealed a depth and range of emotional expression to nurses. Communication workshops based on ‘skills’ model provide necessary but not sufficient training to achieve sustained changes in nurses’ behaviours.

Blocking behaviours most evident when patients disclose feelings. These behaviours were less when nurses felt practical help and support was available.

Patients valued ‘ordinary’ conversation with nurses as well as talk about their illness. Optimistic cheerful conversation is a jointly produced feature of nurse–patient interaction in cancer care.

168 The experience of cancer

establish operational definitions of ‘facilitative’ or ‘blocking’ nurse communications, which are then considered in relation to some idealised normative standard, or ‘good’ communication checklist.47,98 Though these works have provided invaluable insights into nurses’ communication practices, the focus of such research has had adverse spin-offs. It has meant that linguistic and sociological issues such as language use, social context, and the conversation as a joint construction between nurse and patient have been downplayed. The therapeutic effectiveness of the communication has not been evaluated, and the role of nurse researcher, attempting to understand the complexities of nurses’ therapeutic work and the stress of health care professionals in the field of cancer care, rather than exposing failures, has not been fully realised. The challenges facing researchers are immense for it is proving difficult to establish ways to evaluate therapeutic work in health care.102,103 Studies are required that will explore the nature and effectiveness of nurses’ therapeutic work, as well as studies that go beyond individuals’ communicative practice to address systemic and institutional influences. Such research will complement existing studies and reveal the limits of theoretical accounts of nurses’ therapeutic potential, highlighting the education and support needs for practice. A spectrum of research methods is necessary to explore fully the processes and impact of nurses’ therapeutic strategies in cancer care. Interpretative, figurative analysis needs to be incorporated into the more formulaic discourse analytical approaches, which have been used by some researchers to reveal the structures and general patterns of communication within therapeutic encounters. This innovation would reveal people’s idiosyncratic, metaphoric ways of understanding and attributing meaning to their cancer illness, and offer practitioners insights into how they might respond and work with these. Put another way, therapeutic work, with its emphasis on feelings and motivations, as a subject of enquiry, invites research approaches that cross disciplinary boundaries. Geertz104 sees this ‘blurring of genres’ in research as part of a wholesale tendency towards decategorisation:

What we are seeing is not just another redrawing of the cultural map . . . but an alteration in the principles of mapping. Something is happening to the way we think about the way we think.104

This blurring of genres means that the dividing lines between the humanities and the human sciences is less clear,105 and that more than one disciplinary or theoretical ‘map’ may be needed to explore the emotional ‘territory’ of cancer care. It is tantalising to speculate how far the assumptions of conscious intention and the transparency of language can be set aside, and research approaches that examine metaphor and personal imagery used to produce sociologically and psychologically intelligible, clinically relevant findings.

References 1. Lanceley A. (1995). Emotional disclosure between cancer patients and nurses. In Richardson A. and Wilson-Barnet J. (eds.) Nursing Research in Cancer Care. London: Scutari Press, pp. 167–188. 2. Corner J. (1997). Beyond survival rates and sideeffects: cancer nursing as therapy. Cancer Nursing 20, 3–11. 3. Smith M.E. and Hart G. (1994). Nurses’ responses to anger: from disconnecting to connecting. Journal of Advanced Nursing 20, 643–651. 4. Armstrong D. (1983). The fabrication of nurse–patient relationships. Social Science and Medicine 17, 457–460. 5. Peplau H. (1952). Interpersonal Relationships in Nursing. New York: GP Putnam. 6. Peplau H. (1969). Professional closeness. Nursing Forum 8, 342–360. 7. Savage J. (1995). Nursing Intimacy: An Ethnographic Approach to Nurse–Patient Interaction. London: Scutari Press. 8. Bailey C. (1995). Nursing as therapy in the management of breathlessness in lung cancer. European Journal of Cancer Care 4, 184–190. 9. Davis B. and Oberle K. (1990). Dimensions of the supportive role of the nurse in palliative care. Oncology Nursing Forum 17, 87–94. 10. Froggatt K. (1995). Nurses and involvement in palliative care work. In Richardson A. and Wilson-Barnett J. (eds.) Nursing Research in Cancer Care. London: Scutari Press, pp. 151–164. 11. McMahon R. and Pearson A. (1991). Nursing as Therapy. London: Chapman and Hall. 12. Muetzel P. (1988). Therapeutic nursing. In Pearson A. (ed.) Primary Nursing: Nursing in the Burford and

The impact of cancer on health care professionals 169

13. 14.

15.

16.

17. 18. 19.

20. 21. 22.

23.

24.

25.

26.

27.

28.

Oxford Nursing Development Unit. London: Croom Helm. Judd D. (1995). Give Sorrow Words: Working with a Dying Child, 2nd edition. London: Whurr Publishers. Halldorsdottir S. (1991). Five basic modes of being with another. In Gaut D. and Leininger M. (eds.) Caring: The Compassionate Healer. New York: National League for Nursing Press, pp. 37–50. Kitson A. (1986). Steps toward the identification and development of nursing therapeutic functions in the care of hospitalised elderly. PhD thesis, University of Ulster, Coleraine. Ersser S.J. (1990). A search for the therapeutic dimensions of nurse–patient interaction. In Pearson A. and McMahon R. (eds.) Nursing as Therapy. London: Chapman and Hall. Campbell A.V. (1984). Moderated Love: A Theology of Professional Care. London: SPCK. Carper B. (1978). Fundamental patterns of knowing in nursing. Advances in Nursing Science 1, 13–23. Benner P. and Wrubel J. (1989). The Primacy of Caring: Stress and Coping in Health and Illness. Menlo Park, CA: Addison–Wesley. Cox M. (1988). Structuring the Therapeutic Process: Compromise with Chaos. London: Jessica Kingsley. Burnard P. (1994). Counselling Skills for Health Profesionals, 2nd edition. London: Chapman and Hall. Pollitt C. (1991). The Politics of Quality: Managers, Professionals and Consumers in the Public Services. London: Royal Holloway and Bedford New College, Centre for Political Studies. Griffiths R. (1983). Report of the NHS Management Inquiry. London: Department of Health and Social Security. Calman K. and Hine D. (1995). A Policy Framework for Commissioning Cancer Services. London: Department of Health and Welsh Office. Harrison S., Hunter D., Marnock G. and Pollit C. (1989). General management and medical autonomy in the National Health Service. Health Services Management Research 2, 38–46. Bloomfield B., Coombs R., Cooper D. and Rea D. (1992). Machines and manoeuvres: responsibility accounting and the construction of hospital information. Accounting, Management and Information Technologies 2, 199–205. James N. (1992). Care = organization + physical labour + emotional labour. Sociology of Health and Illness 14, 488–509. National Institute for Clinical Excellence. (2004). Guidance on Cancer Services: Improving Supportive and Palliative Care for Adults with Cancer. London: National Institute for Clinical Excellence.

29. Davies C. (1995). Gender and the Professional Predicament in Nursing. Buckingham: Open University Press. 30. Traynor M. (1996). A literary approach to managerial discourse after the NHS reforms. Sociology of Health and Illness 18, 315–340. 31. Salvage J. (1990). The theory and practice of the ‘New Nursing’. Nursing Times 86, Occasional Paper, 42–45. 32. Pearson A. (ed.) (1988). Primary Nursing: Nursing in the Burford and Oxford Nursing Development Units. London: Chapman and Hall. 33. Manley K. (1997). A conceptual framework for advanced practice: an action research project operationalizing an advanced practitioner/consultant nurse role. Journal of Advanced Nursing 6, 179–190. 34. Manley K. (2002). Refining the consultant nurse framework: commentary on critique. Nursing in Critical Care 7, 84–87. 35. Glaser B. and Strauss A.L. (1965). Awareness of Dying. Chicago, IL: Aldine. 36. James N. (1993). Divisions of emotional labour: disclosure and cancer. In Fineman S. (ed.) Emotions in Organizations. London: Sage, pp. 94–117. 37. Menzies Lyth I. (1988). The functioning of social systems as a defence against anxiety (1959, 1961,[1961b], 1970). In Menzies Lyth I. (ed.) Containing Anxiety in Institutions: Selected Essays. London: Free Association Books, pp. 43–94. 38. Lawton J. (2000). The Dying Process: Patient’s Experiences of Palliative Care. London: Routledge. 39. Peräkylä A. (1991). Hope work in the care of seriously ill patients. Qualitative Health Research 1, 407–433. 40. Savage J. (1992). Implications of New Nursing Initiatives for the Nurse–Patient Relationship: An Ethnographic Study of Two Wards. London: Bloomsbury and Islington College of Nursing and Midwifery. 41. Smith P. (1992). The Emotional Labour of Nursing: How Nurses Care. Basingstoke: Macmillan. 42. Obholzer A. and Roberts V.Z. (eds.) (1994). The Unconscious at Work: Individual and Organizational Stress in the Human Services. London: Routledge. 43. Di Giacomo S.M. (1987). Biomedicine as a cultural system: an anthropologist in the kingdom of the sick. In Baer H. (ed.) Encounters in Biomedicine: Case Studies in Medical Anthropology. New York: Gordon and Breach, pp. 315–346. 44. Hak T.A.-M., Koeter T. and van der Wal G. (2000). Collusion in doctor-patient communication about imminent death: an ethnographic study. British Medical Journal 321, 1376–1381.

170 The experience of cancer 45. Knight M. and Field D. (1981). A silent conspiracy: coping with dying cancer patients on an acute surgical ward. Journal of Advanced Nursing 6, 221–229. 46. Silverman D. (1987). Communication and Medical Practice: Social Relations in the Clinic. London: Sage. 47. Wilkinson S. (1991). Factors which influence how nurses communicate with cancer patients. Journal of Advanced Nursing 16, 677–688. 48. Stead M., Brown J.M., Fallowfield L. and Selby P. (2003). Lack of communication between health care professionals and women with ovarian cancer about sexual issues. British Journal of Cancer 88, 666–671. 49. Dowsett S.M., Saul J.L., Butow P.N. et al. (2000). Communication style in the cancer consultation: preferences for a patient-centred approach. Psycho-oncology 9, 147–156. 50. Maguire P., Faulkner A., Booth K., Elliot C. and Hillier V. (1996). Helping cancer patients disclose their concerns. European Journal of Cancer 32A, 78–81. 51. Fallowfield L., Jenkins V., Farell V. et al. (2000). Efficacy of a Cancer Research UK communication skills training model for oncologists: a randomised controlled trial. Lancet 359, 650–656. 52. Souhami R. (1978). Teaching what to say about cancer. Lancet ii, 935–936. 53. Rogers M.S. and Todd C.J. (2000). The ‘right kind’ of pain: talking about symptoms in outpatient oncology consultations. Palliative Medicine 14, 299– 307. 54. Mishler E.G. (1984). The Discourse of Medicine: Dialectics of Medical Interviews. New Jersey: Norwood Publishing Company. 55. Kubler-Ross E. (1970). Death: The Final Stage of Growth. London: Tavistock. 56. Leydon G.M., Boulton M., Moynihan C. et al. (2000). Cancer patients’ information needs and information seeking behaviour: in depth interview study. British Medical Journal 320, 909–913. 57. Foucault M. (1973). The Birth of the Clinic. London: Tavistock. 58. Armstrong D. (1984). The patient’s view. Social Science and Medicine 18, 737–744. 59. Haward R., Amir Z., Borrill C. et al. (2003). Breast cancer teams: the impact of constitution, new cancer workload, and methods of operation on their effectiveness. British Journal of Cancer 89, 15–22. 60. Teger A.I. and Pruitt D.G. (1967). Components of group risk taking. Journal of Social Psychology 5, 189– 205. 61. Lewis C., O’Brien R. and Barraclough J. (2002). The Psychoimmunology of Cancer. Oxford: Oxford University Press.

62. Moorey S., Greer S., Watson M. et al. (1994). Adjuvant psychological therapy for patients with cancer: outcome at one year. Psycho-oncology 3, 39–46. 63. Cassileth B.R. (1980). Information and participation preferences among cancer patients. Annals of Internal Medicine 92, 832–836. 64. Parkes C.M. (1978). Psychological aspects. In Saunders C.M. (ed.) The Management of Terminal Diseases. London: Arnold, pp. 44–64. 65. Baider L. and Porath S. (1981). Uncovering fear: group experiences of nurses in a cancer ward. International Journal of Nursing Studies 18, 147–152. 66. Hanson E.E. (1991). The Cancer Nurse’s Perspective: Stress and the Person with Cancer. Lancaster: Quay Publishing. 67. Elkind A.K. (1982). Nurses’ views about cancer. Journal of Advanced Nursing 7, 43–50. 68. Stacey J. (1997). Teratologies: A Cultural Study of Cancer. London: Routledge. 69. Word C.O. (1974). The nonverbal mediation of selffulfilling prophesies in interaction. Journal of Experimental Social Psychology 10, 109–120. 70. Mood D. and Lick C.F. (1979). Attitudes of nursing personnel toward death and dying: linguistic indicators of denial. Research in Nursing and Health 2, 95–99. 71. Vachon M., Lyall W. and Freeman S. (1978). Measurement and management of stress in health professionals working with advanced cancer patients. Death Education 1, 365–375. 72. Delvaux N., Razavi D. and Farvacques C. (1988). Cancer care–stress for health professionals. Social Science and Medicine 27, 159–166. 73. Mcilfatrick S.J. and Keeney S. (2003). Identifying cancer nursing research priorities using the Delphi technique. Journal of Advanced Nursing 42, 629– 636. 74. Ullrich A. and Fitzgerald P. (1990). Stress experienced by physicians on the cancer ward. Social Science and Medicine 13, 213–218. 75. Whippen D.A. and Canellos G.P. (1991). Burnout syndrome in the practice of oncology: results of a random survey of 1000 oncologists. Journal of Clinical Oncology 9, 1916–1920. 76. Cull A. (1991). Staff support in medical oncology: a problem solving approach. Psychology and Health 5, 129–136. 77. Kent F.G., Wills G., Faulkner A. et al. (1994). The professional and personal needs of oncology staff: the effects of perceived success and failure in helping patients on levels of personal stress and distress. Journal of Cancer Care 3, 153–158. 78. Isikhan V., Comez T. and Zafer Danis M. (2004). Job stress and coping strategies in health care professionals

The impact of cancer on health care professionals 171

79.

80.

81.

82. 83.

84.

85.

86. 87.

88.

89. 90. 91.

working with cancer patients European Journal of Oncology Nursing 8, 234–244. McNamara B., Wadell C. and Colvin M. (1995). Threats to the good death: the cultural context of stress and coping among hospice nurses. Sociology of Health and Illness 17, 222–244. Miller D. and Gillies P. (1996). Is there life after work? Experiences of HIV and oncology health staff. AIDS Care 8, 167–182. Weisman A.D. (1981). Understanding the cancer patient: the syndrome of the caregiver’s plight. Psychiatry 44, 161–168. George J. (1990). Why stress is a management issue. Health Manpower Management December, 17–19. Ramirez A.J., Graham J., Richards M.A., Cull A. and Gregory W.M. (1996). Mental health of hospital consultants: the effects of stress and satisfaction at work. Lancet 347, 724–728. Taylor C., Graham J., Potts H.W.W. et al. (2005). Changes in mental health of UK hospital consultants since the mid-1990s. Lancet 366, 742–744. Department of Health (2000). The NHS Cancer Plan: A Plan for Investment, a Plan for Reform. London: Department of Health. Wilkinson S.M. (1994). Stress in cancer nursing: does it exist? Journal of Advanced Nursing 20, 1079–1084. Bruneau B.M. and Ellison G.T. (2004). Palliative care stress in a UK community hospital: evaluation of a stress reduction programme. International Journal of Palliative Nursing 10, 296–304. Papadatou D., Anagnostopouros F. and Mouros D. (1994). Factors contributing to the development of burnout on oncology nursing. British Journal of Medical Psychology 67, 187–199. Lazarus R. (1966). Psychological Stress and the Coping Process. New York: McGraw-Hill. Pearlin L.I. (1989). The sociological study of stress. Journal of Health and Social Behaviour 30, 241–256. Hirschorn L. (1988). The Workplace Within: Psychodynamics of Organizational Life. Cambridge, MA: MIT Press.

92. Freud A. (1993). The Ego and the Mechanisms of Defence. London: Karnac Books. 93. Klein M. (1937). Love, Guilt and Reparation and Other Works, 1975 edition. London: Hogarth. 94. Brown D. and Pedder J. (1991). Introduction of Psychotherapy: An Outline of Psychodynamic Principles and Practice. London: Tavistock/Routledge. 95. Jacobs M. (1998). The Presenting Past: the Core of Psychodynamic Counselling and Therapy. Buckingham: Open University Press. 96. Menzies Lyth I. (1988). Containing Anxiety in Institutions, Vol. 1. London: Free Association Books. 97. Main T. (1968). The ailment. In Barnes E. (ed.) Psychosocial Nursing: Studies from the Cassel Hospital. London: Tavistock Publications, pp. 33–60. 98. Booth K., Maguire P.M., Butterworth T. and Hillier V.F. (1996). Perceived professional support and the use of blocking behaviours by hospice nurses. Journal of Advanced Nursing 24, 522–527. 99. Hunt M. (1989). Dying at Home: its Basic ‘Ordinariness’ Displayed in Patients’ Relatives’ and Nurses’ Talk. PhD thesis, University of London. 100. Heaven C.M. and Maguire P. (1996). Training hospice nurses to elicit patients’ concerns. Journal of Advanced Nursing 23, 280–286. 101. Jarrett N. and Payne S.A. (2000). Creating and maintaining ‘optimism’ in cancer care communication. International Journal of Nursing Studies 37, 81–90. 102. Silverman D. (1997). Discourses of Counselling: HIV Counselling as Social Interaction. London: Sage. 103. Savage J. (2004). Researching emotion: the need for coherence between focus, theory and method. Nursing Inquiry 11, 25–34. 104. Geertz C. (1983). Local Knowledge: Further Essays in Interpretive Anthropology. New York: Basic Books. 105. Denzin N.K. (1970). The Research Act: A Theoretical Introduction to Sociological Methods, 3rd edition. Englewood Cliffs, NJ: Prentice Hall.

CHAPTER NINE

Therapeutic strategies in cancer care Anne Lanceley

There is an increasing awareness among health care professionals and consumers of the painful issues surrounding cancer treatment and care. Receiving the diagnosis and negotiating subsequent treatment constitutes a psychic trauma, and in this case professionals need to look into their own feelings, as well as attempting to be aware of those of the people in their care. An understanding of the need for not only quality medical care but also emotional care and support, including the right to express every sort of emotion as a response to the trauma of cancer illness, is well established.1,2 This interest and awareness has been driven, in part, by the idea that the way feelings are expressed, and in particular active holding back from expressing feelings, not only may render a person ‘cancer prone’ but may affect the progress of the cancer illness.3,4 This has been a powerful theme in the cancer literature and in the minds of some people who have cancer, judging by patients’ own accounts of their illness experience.3–7 It continues to be a high research priority. What is striking in this context is that cancer nurses, though generally accepting of the therapeutic potential of their role at some level, and while acknowledging that the people for whom they care may use the trusted relationship with them to explore their own feelings, in practice are pragmatic in their approaches to managing individual concerns. Put another way, nurses’ actual practices are not generally theory driven and do not involve an explicit, mutually negotiated therapeutic plan.

Much of what follows is theoretical. This is not as a way of avoiding the feelings of uncertainty and the sense of vulnerability nurses experience when working with cancer but as a way of providing a variety of lenses through which the practice can be viewed. The use of theory and alternative frameworks for understanding this work enables us to see when processes are ‘stuck’. It is hoped that the verbatim accounts will allow for contemplation and the pursuit of the reader’s personal meanings in the light of their own clinical experience. No essential right or wrong theories or practical ways of managing the concerns of people with cancer are advocated here. There are numerous texts describing ways of managing these practically.8–12 At one level everything depends on how the particular nurse is attempting to work with an individual. There are, however, fundamental beliefs and questions that run throughout the chapter. They concern: • the relative importance of nurses sharing awareness of their intent when working with someone with cancer • how unconscious thoughts and feelings may influence work with cancer • different levels and ways of helping individuals express and understand their feelings, deal with problems, adjust and make treatment decisions

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• the ways nurses define themselves as ‘listener’, ‘counsellor’, or ‘therapist’ • the belief that contact with the nurse is beneficial or ‘therapeutic’ if an individual feels understood and is thus helped to understand himself better. The understanding alluded to in the last point may take an unspoken form in the case of a nurse who sits and bears silent witness to someone who is dying. Being with the person is an opportunity for them to ‘be’. Allowing the person to be dying validates them, whereas to deny the person’s dying life would be to deny their life. The nurse is communicating understanding and acceptance of the person’s life and impending death.13 There are two styles of relating to someone with cancer, which can be placed along a continuum of therapeutic strategies: the first is concerned with the deciphering of meaning, whereas the second is in the nature of ‘holding’ and ‘containing’ the experience. The cancer nurse needs to strike a balance within these two broad types of functioning.

Structuring the nurse–patient relationship In order for the nurse to do this and remain sensitive to the often chaotic emotional experiences during cancer treatment, as well as recognising and helping with their information needs, Cox advocates structuring the relationship.14 The dimensions of time, depth, and mutuality, if thought about by the nurse, can help to locate her use of herself on behalf of the person, and offer a means of monitoring the changing course of what happens in the relationship. Cox makes a useful analogy with the built-in range finder on a camera and the nurse’s initiative in bringing what the person is saying into focus so that they are both operating at the same focal point. Like the personal qualities considered essential for nurses to relate and respond effectively – acceptance, warmth, genuineness, and empathy – the dimensions of time, depth, and mutuality are independent of any particular theoretical approach and are relevant, however brief or extended the encounter may be.

Time

The significance of time as a dimension is intensified for someone with a life-threatening illness and there is a shared awareness of this as the uncertainty of a limited prognosis is tolerated. This uncertainty gives an added poignancy to the maxim from counselling psychology: if the patient does not know when the end is, he cannot know when ‘just before the end’ is. This is important for thinking about the timing of someone’s disclosures, and particular moments of insight within a talk, when feelings are expressed and may be acknowledged and understood for the first time. The maxim is also relevant for a series of conversations and encounters that a person may have with a nurse over many months or years. It prompts the nurse to consider the beginning of her relationship with them and its likely duration, which may coincide with a treatment regime or commence at the palliative phase of the illness, ending with their death; it focuses attention on the length of time available for any single encounter, and on how boundaries may be set so that the time available can be used constructively. Holidays and other absences may become increasingly important and require managing. A more subtle aspect of the time dimension is how aspects of the person’s past, their present, and their plans and hopes for the future may be acknowledged and balanced so that there is momentum and sense of continuity in the relationship. Depth

The second dimension concerns depth. This is related to levels of patient disclosure from surface to hidden aspects of their lives and themselves. It brings into play the complex interaction between unconscious and conscious levels of awareness, which has been one of the major contributions of psychoanalytic theory to the understanding of human behaviours and experience. Linked to this are the skills and activity of the nurse responding to different levels of personal disclosure. Cox distinguishes between three levels of self-disclosure and offers them as a useful conceptual tool for practice, also suggesting that they can be used to assess the depth of the relationship.14

174 The experience of cancer

First-level disclosures are safe and relatively unimportant and act as ‘feelers’ in the relationship. Level two disclosures involve the disclosure of personal information but tend to be emotionally neutral. They are an indication that the relationship has developed to the point where the person feels confident and trusting with the nurse. Third-level disclosures give insight into the personal, deep, existential concerns, and by definition are unique to the individual. Things from the person’s own private world that they may not have revealed before may be disclosed. The three levels can be used to assess the depth of the relationship, both on a session-by-session basis and within a longer term relationship. While attempting to integrate depth and time structuring into a cohesive therapeutic strategy, the nurse must also be aware of the crucial significance of the place of mutuality and reciprocity within the nurse–patient relationship. Mutuality

The third dimension of structure is mutuality, which describes the potential significance of the shared relationship. Mutuality refers to how much the nurse discloses about herself in order to share with the person the experience he is disclosing. This is not primarily about how much the nurse reveals about her own problems, which could be perceived as overburdening. It is about a mutuality of disclosure grounded in the here-and-now of the talk and physical care. The nurse may be very open in expressing her feelings in relation to this shared experience, which is very different from disclosing her own personal life experiences. Rather than emotionally withdrawing and hiding behind a professional mask, the nurse acknowledges the person’s distress and the shared pain and distress inherent in the situation. This involves acceptance, warmth, genuineness, and empathy and, in addition, may develop through the nurse actively using transference and countertransference. Empathy is the ability to enter the perceptual world of another person and convey this identification of feeling to them.8 As well as an empathetic ‘looking in’ through an exploration of inner feelings and meanings, empathy also involves ‘looking out’ on behalf of someone else; seeing the

world, the context in which they live, work, and receive their treatment, through their eyes. Some nurses have greater intuitive awareness than others, and a question that taxes nurse educators is how far empathy can be both taught and learned.15 What seems clear is that it is the nurse’s use of her own personality that sustains empathy. The quality that enables people who have cancer to risk what may amount to further reduction of self-esteem and distress, by emotionally exposing themselves still further, is if the nurse is empathetic and not only listens, but hears, understands and, most difficult of all, is able to convey that she understands. How is this done? Can one nurse do this for all those in her care? One of the essentials for empathy is that of showing by word, gesture, and expression a detrivialising, unconditional concern. The person believes that what concerns him is not trivial and he may to some extent test out the nurse, who may be presumed to adopt a ‘trivialising’ attitude to them by the very fact that he has become, and is labelled, a ‘cancer patient’. Therefore, mutuality is a measure of the depth of the relationship and of the nurse’s commitment to the relationship.

Developing communication skills The personal qualities of empathy, a nonjudgemental attitude and even genuineness are considered essential for nurses to respond effectively to patients, and the use of communication skills enhances the nurse’s ability to relate and to work confidently across the spectrum of functioning. The use of communication skills is independent of theoretical approach or the way in which the nurse and patient agree to structure their relationship. Active listening

• Attending and being physically ‘present’ • Questioning: closed open leading value-laden ‘why’, ‘how’, and ‘what’ questions confronting questions

Therapeutic strategies in cancer care 175

• • • • • • • • • • •

Allowing expression of feelings Prompting Probing Focusing Clarifying Reflecting Paraphrasing Challenging Self-sharing Summarising Monitoring transference and countertransference.

As this chapter is more a contextual exploration of nurses’ strategies for managing cancer patient’s concerns, knowledge and understanding of the skills needed to communicate effectively are not described in detail. A great deal has been written on this, and numerous texts explain and give practical examples of the skills summarised above.8,16–20

Alternative frameworks for understanding nurses’ work with cancer patients Knowledge of a range of theoretical approaches (see Table 9.1) will open up a spectrum of possibilities for managing a person’s concerns, and is necessary if the nurse is to understand and work comfortably across the spectrum of functioning described at the beginning of the chapter, from ‘holding’ and ‘containing’ to helping to decipher the meaning of cancer illness.12,21–35

The meaning of illness and its therapeutic use Cancer can disrupt virtually all aspects of a person’s life. Everyday activities are affected, as well as short-term and long-term goals. A person is forced to reassess what is meaningful and to scrutinise values that have hitherto governed their life. Silver and Wortman suggest that a person’s ability to find meaning or purpose in a crisis is

Table 9.1 Theoretical approaches for managing a person’s concerns Psychological approach

Theorist

Personal construct approach Gestalt therapy Transactional analysis

Kelly (1955)22

Person-centred therapy Rational emotive therapy (RET) Behavioural therapy Neuro-linguistic programmes (NLP) Reality therapy Psychosynthesis Psychotherapy

Cognitive therapy Adjuvant psychological therapy for patients with cancer (APT) Logotherapy

Perls (1969)23 Berne (1964)24 Harris (1973)25 Rogers (1951)26 Ellis (1962)27 Krumboltz and Thorenson (1969)28 Bandler (1985)29 Glasser (1965)30 Ferrucci (1982)31 Freud (1938)32 Klein (1937)21 Bion (1962)33 Beck (1976)34 Moorey and Greer (1989)12 Frankl (1959)35

associated with the ability to adjust to it.36 People need to see their lives as essentially meaningful, and as Brody noted, ‘suffering is produced and alleviated primarily by the meaning that one attaches to one’s experience’.37 The primary mechanism for attaching meaning to particular experiences is to tell stories about them. It is through hearing and telling stories that human beings have always come to organise and understand their experiences.38 There are numerous important testimonies of personal struggles with cancer illness: Diary of a Breast, written by a woman with breast cancer,39 Cancer Through the Eyes of Ten Women,7 Cancer in Two Voices, co-written by partners facing cancer,40 the intense descriptions by Ruth Picardie,41 first in a series of newspaper articles and later in a book of the progress of her breast cancer, or And When Did You Last See Your Father? about a son’s understanding of his father’s cancer,42 and the elegiac accounts

176 The experience of cancer

of the experience of ovarian cancer treatment and illness by Anne Dennison,43 to quote but a few. They provide crucial insight into work in the field and contribute forcibly to our clinical thinking. Stories and testimonies of illness are no different from other descriptions; we construct an understanding of illness by comparing it to things other than itself, to things found in the realm of our personal experience. It is all but impossible to conceive of illness without recourse to metaphor, if only because ‘the objective world is not directly accessible but is constructed on the basis of the constraining influences of human knowledge and language’.44 Lakoff and Johnson’s seminal work provided evidence that metaphor was responsible for an individual’s method of making sense of things.45 The metaphorical potency of cancer illness stories has been explored in the writings of Sontag,46 and is evidenced in recent studies.47 By examining professional and lay expressions of cancer illness, Sontag revealed just how prevalent certain metaphorical descriptions are: ‘cancer is war’ and ‘cancer is invasion’ are two examples that sustain a host of other metaphorical expressions, such as ‘they attacked it with chemotherapy’, or ‘his natural defences were low’. It is only recently that these ideas have begun to influence ideas for practice in cancer care.48–50 Attention to the metaphors and personal imagery used by individuals is important, in the therapeutic sense that an illness conceived of metaphorically might be coped with and responded to in the same way.51 There is a substantial literature concerned with narrative analysis of health and illness, much of it influenced by the seminal work of Kleinman and Mishler.52,53 Kleinman suggests that individuals’ explanatory models of illness originate in biomedicine but also from the construction of sustaining fictions that can make sense of the illness for the individual experiencing self.52 Kleinman insists that the patient’s personal narrative does not merely reflect illness experience but rather it contributes to the experience of symptoms and suffering. A nurse’s ability to facilitate someone to find meaning in their illness and to help someone with cancer to arrive at explanations that sustain

them are research and practice themes in cancer care. This interest comes from an interweaving of various threads: • an acknowledgement of the psychodynamic processes in which the patient comes to tell and then re-author his or her individual life story, thus throwing light upon their inner life • the application of social constructionist philosophy and politics to health care, which places a sense of the person as a story-making, storyconsuming, social being embedded in social, cultural, and historical conditions, at the centre of its conceptual framework • the movement towards post-modern forms of clinical practice where the key characteristics are: – reflexivity – local knowledge replacing ‘grand narratives’ – multiplicity of meanings – patient empowerment – commitment to pluralism and multiplicity of meaning – deconstruction of the idea of a singular entity – the ‘true self’ – in favour of the self as a construction. How an individual nurse listens to a person’s story and interprets it will depend on the broad theoretical approach of the nurse and decisions about the structuring of the relationship. There are many different ways in which a nurse and patient can work together to tell and then retrieve meaning from the story. If the nurse has a psychodynamic orientation, the interpretation of the story will be in terms of unconscious emotional processes, the functioning of psychological defences, and how the person’s core life story repeats itself in different relations at different points in his or her life. If the nurse has a behavioural orientation, then the story may be used to identify behavioural routines, and if the nurse works cognitively, telling the story may be viewed as an act of problem solving and management. These broad approaches are summarised here:

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Care strategy 9.1 Preliminary nurse strategies for narrative change • Nurse listens for patient stories. • Nurse uses communication skills to elicit the stories the person lives by. • Nurse listens to how the story is told: – pauses – voice quality – phrasing – control of emotional distance by: – use of objectifying language, e.g. ‘it’, ‘one’ – absence of experiential detail and colour – emotional immediacy by: – descriptions of place – direct speech – present tense. • Nurse gives close attention to the symbolisation of feelings in the stories and to the metaphors used as indicators of implicit meaning. • Nurse has a sensitive ear for differences and incongruities in story construction and telling.

Though it is recognised that there may be intrinsic value in the person telling their story to give voice to areas of experience that have previously been silenced, there is a difference between the nurse simply hearing the story, and therapeutic storytelling described in Care strategy 9.1. In the former, the person may tell and retell the same story in the same way throughout their treatment experience and for years afterwards, and derive comfort and support from this. With therapeutic storytelling, the shared expectation for patient and nurse would be that the story can change. Through careful listening and sensitive interpretation of what the patient says, the nurse facilitates the ability of the patient to make sense of their illness, with the possible emergence of a more satisfying and personally meaningful narrative.

Psychodynamic approach An emphasis on the existence of unconscious processes and their role in communication lies at the heart of psychodynamic understanding, which differs from other theories concerned primarily with the conscious mind.

The approach focuses on early memories and feelings from the past that usually remain hidden from our conscious mind but that can be triggered by something in the present. The impact of past memories on present behaviour patterns can be a powerful one. A process of transference occurs when thoughts, feelings, emotions, and expectations belonging to a person in the past are transferred to a person in the present. That person is then reacted to as if they were the person from the past, which is often inappropriate.53 An understanding of this process of transference may be an important tool for the nurse working to understand someone with cancer and other relationships within the work setting. Behind the psychodynamic approach is the idea that meaning and the key to understanding a person’s response to illness and ourselves lie beneath the surface and in the past, and that what we are is the result of the dynamic interplay between past and present experience, between our conscious and unconscious, between our external and internal reality and our developing personality. Internal reality, the part of the mind referred to as our ‘internal world’, contains many parts or representations of ourselves, as well as representations of relationships with important others and between parts of ourselves, i.e. our child self may be in conflict with our parent self. The nature of these representations is influenced not only by our early external relationships with mother and father, but also by fantasies fuelled by impulses such as aggression, hate, and love, with which children try to make sense of the world, when there is no way to check their perceptions against reality.21 These early imaginings are gradually modified, because we test them against reality as we progress through life. However, it is to these perceptions of people, ourselves, and the world that we often fall back or regress, when under stress. It is this inner world that informs and colours our perception of the outer world.54 When cancer strikes, usual ways of coping may not help, and the person becomes vulnerable and regresses to reacting in more primitive ways. This might show itself through someone trying to cope with the severe anxiety of having cancer by

178 The experience of cancer

temporarily transferring onto the role of the nursing staff qualities of an all-giving, warm, protective maternal figure.54 Futtermen and Wellisch provide some evidence for this.55 In their study, they observed how patients on a bone marrow transplant unit experiencing extreme distress and anxiety regressed to emotional levels of early childhood, relating to staff in the transference much as they did to their own parental figures. Alternatively, the person with cancer may avoid struggling with ambivalent feelings by splitting them. They may need to keep hope and goodness separate so they do not get spoiled by more negative feelings such as rage and despair. In these circumstances when experience cannot be integrated, a nurse may be either idealised or denigrated.54 Another example of this is the kind of psychic splitting that facilitates the person’s acceptance of impending death. Two opposite ideas are verbalised. One reflects a full realisation of the closeness of impending death, the other a faith in surviving, often expressed in vivid fantasies about the future.54 If nurses remain open to distress, holding onto feelings for a person until they can be made sense of or borne, broadly speaking they would be fulfilling the function a mother performs quite unconsciously for her baby. The mother allows herself to experience her baby’s distress, to think about it and process it, so that she can think about and respond to the baby in a sensitive way. Our capacity to do this depends on the quality of our own mothering and the confidence we feel in our ‘mother’ institution to contain us.54 The idea of container/contained is another powerful idea for framing clinical work in which nurses may be needed to offer containment to cancer patients who cannot make sense of their experience for themselves, and feel overwhelmed with anxiety as a consequence.56 In Bion’s theory of container/contained, the capacity to think about emotional experience and develop emotional resilience to cope with difficulties in later life depends on a baby’s earliest experience of being thought about and someone being attentive to him or her.57 Emmanuel describes what happens according to this theory.58 A baby is bombarded by sense

data that threaten to overwhelm him or her. The baby’s mind is not developed enough to contain the powerful feelings and the baby is therefore totally dependent on the availability of an object into whom the powerful feelings can be put in order to get rid of them. Bion calls this object the ‘container’ and the incomprehensible painful feelings the ‘contained’. The container, the mother or caregiver, then has to try and make sense out of the baby’s experience by thinking about whatever the baby has made her feel. The mother has to decipher what the baby is communicating. By receiving the baby’s feelings, i.e. the contained, and making sense of them, the mother can respond to the baby with understanding. The baby feels immediately more comfortable and is also able to take inside himself the idea that his mother has space in her mind for him and he feels understood. The baby begins to develop his own capacity to reflect on his experience and think. The relevance of this theory to nurses caring for cancer patients who may not be able to make sense of their experience for themselves, and feel overwhelmed with anxiety as a consequence, is clear: the nurse may be needed to offer containment to the person with cancer. A nurse may gain crucial clues as to how far a person is requiring her to act as a container, and an understanding of the communication by the feelings aroused in him or her by the person. Counter-transference is the name given to the nurse’s emotional response to the person, i.e. the conscious thoughts and feelings the nurse has when she is with them. This form of communication from the person can provide the nurse with valuable information as to their state of mind. When thought about by the nurse it can also inform him or her as to the most appropriate response to the person, since it prompts the question: ‘What sort of feelings am I being asked to hold for this person?’ They may be feelings of vulnerability or feelings of anger, defeat, or overwhelming depression. When nurses have contact with a person’s own unconscious in this way it is usually a very powerful experience. It is powerful because the person is attempting to relieve internal distress by externalising it and giving the nurse responsibility to contain aspects of the self.54

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If the nurse can allow the person’s feelings to sink in, this helps the person to explore the feelings in a personality powerful enough to contain them and perhaps to face something they previously viewed as unbearable. A further therapeutic skill lies in acknowledging the person’s anxiety, naming it, and then deciding when and if to hand the feeling back to the person in a form that they can manage.

Cognitive approach This approach relies on an understanding that behaviours and emotions are intimately linked with beliefs about the world. While beliefs influence feeling responses, they are rarely questioned; they lie beyond normal awareness but are not unconscious. In this approach it is not the appraisals, interpretations, and evaluations that the individual makes about their cancer symptoms or the effects of treatment per se, but the meanings they hold for the person involved. How a person thinks about the illness and his or her life is consequently central to their mental adjustment to cancer. As Moorey and Greer note, if loss is the predominant meaning a person attributes to their cancer then the person is likely to feel depressed.12 If cancer primarily represents a threat to health, security, or life itself, the person is more likely to feel anxious. In practice this approach aims to help people identify the relationship between cognitions, emotions, and behaviours, to increase their awareness of what seem like dysfunctional thoughts and alter them (see Care strategy 9.2). This means challenging and confronting the person’s beliefs and negative automatic thoughts. Negative thoughts may be enhanced and perpetuated by distortions in thinking and appraisal: for example, people may focus on only one part of their memory of a diagnostic consultation – the negative aspects – even though other parts contradict this. Habitual thinking increases a person’s vulnerability to hearing certain information: someone whose usual style of thinking is very ‘black and white’ may think they face imminent death when they have been told that all diagnostic tests indicate that the cancer they have has a good prognosis.

Care strategy 9.2

Cognitive strategies

• Facilitation of emotional expression • Elicitation of automatic thoughts associated with the person’s problems • Person is taught to identify his or her own negative thoughts • Person set task of monitoring own thoughts • Distorted, negative thinking is challenged by reality testing and examining evidence for a particular thought and belief. Searching for an alternative, decatastrophising and helping the person to think about what they fear to see • The use of more constructive thoughts and behaviours as a response to distressing thoughts is practised and reinforced.

The work is conceptualised as a joint problemsolving exercise in which the nurse collaborates with the person, seeking primarily cognitive or rational explanations in order to develop and try out strategies for coping with cancer. Therapeutic strategies are primarily educational and designed to foster a positive attitude so that insights gained will extend to future events. They are used extensively with people with cancer to reduce emotional distress and improve coping.12

Behavioural approach This approach is based on the idea that since all human behaviour is learned through processes of positive reinforcement it can, if necessary, be unlearned.28 The nurse working within this framework will be interested to identify with the person what they see as undesirable behaviours. Once these behaviours have been identified, the next step is to organise a scheme of reinforcement whereby more positive behaviours will be encouraged. No attempt is made in the behavioural approach to understand the cause of behaviours or to understand current behaviours in relation to the person’s past. Instead the focus is learning, unlearning, and relearning. Cancer robs patients of a sense of control of their own bodies, and behavioural techniques are considered to help give a sense of mastery or control over the person’s life and environment.

180 The experience of cancer

Behavioural assignments can help the person to develop a sense of control over the illness through encouraging co-operation with treatment or selfhelp techniques such as visualisation and relaxation, distraction, graded task assignments, and activity scheduling. These behavioural assignments can also develop control in areas unrelated to cancer, and indirectly foster a fighting spirit. The techniques are used in cancer to help with symptom distress, anxiety, and depression, and notably as part of cognitive therapies, including Moorey and Greer’s ‘adjuvant psychological therapy’.12

Humanistic approach Drawing heavily on the field of existential philosophy, humanistic psychology argues that people are essentially free and responsible for their own condition. We are not driven by an unconscious mind, nor are we simply the product of what we have learned. Essentially, we are agents. It is the fact of consciousness that gives us the ability to determine our own course of action through life and we are the best arbiters of what is and is not good for us. It was out of the humanistic school that the client-centred approach to counselling developed. The aim of working with the person, according to Rogers,26 was not necessarily to explore their past, or to modify their behaviour or thinking, but to accept them and to help them progress through their difficulties by their own route, accompanying them on their own personal search for meaning.

Charting the work with cancer patients Tschudin10 and Burnard8 argue that nurses need to make explicit the possible nature of their helping relationships with the person with cancer, based on the individual’s needs. This is essential for the relationship to be consensual and collaborative. It may be that the nurse and patient explicitly agree to enter into a counselling relationship in which the nurse agrees to act in the capacity of ‘counsellor’. Alternatively, the nurse and patient may agree to work on certain concerns

while the nurse will continue to perform within her functional role as nurse. In this case, she will be using counselling skills to enhance her communication with the person. In either situation, a model for practice allows both the nurse and the individual to chart where the relationship is going and how it is progressing. As a result, work is likely to be more focused and more satisfying, and goals will be identified, agreed and reached. Different models for helping are presented in Table 9.2. They are broadly problem-management models, which are underpinned by cognitive-behavioural approaches to helping people with cancer. The primary sources give more information on these models. How a nurse eventually does help a person to manage their concerns, how they incorporate a range of theoretical approaches into a personal repertoire of strategies for helping, and how they structure and model the progress of their work will depend on a number of things, including: • • • • • • • • • • •

skill level what he or she feels comfortable doing beliefs and value systems concerning people level of self-awareness mood at the time present life situation perception of what is ‘wrong’ with the person current workload nature of support and supervision available the context for the work lay and professional expectations of the therapeutic potential of the nurse–patient relationship.

Some of these influences will be evidenced in the extracts chosen to explore strategies for managing concerns below.

Managing concerns This section of the chapter describes work with four people with cancer, using verbatim accounts of their experiences and how the nurse responded to their concerns. It is recognised here that there are times when the most important communication from the person is unspoken and that people

Therapeutic strategies in cancer care 181 Table 9.2

Different models for helping the nurse–patient relationship

Egan (1994)17

Carkhuff (1987)59

Nelson-Jones (1993)20

Burnard (1994)8

Tschudin (1995)10

Three-stage open systems model

Developmental model

Lifeskills helping model

Eight stage map

Four questions model

I Problem definition story: Present scenario Indentify blind spots

Attending Responding to clients’ feelings, thoughts

Developing the relationship, identifying and clarifying problems Accessing problem(s) and redefining in terms of life-skills

1. Meeting the person

1. What is happening?

2. Discussion of surface issues

2. What is the meaning of it?

3. Revelations of deeper issues

3. What is your goal?

Stating working goals and planning interventions

4. Ownership of feelings and emotional release

4. How are you going to do it?

Personalising the experience Meaning II Goal development possibilities: Preferred scenario Goals Objectives

Goals

5. Generation of insight 6. Problem-solving future planning

III Action strategies plan

Initiating action

Interventions to develop self-helping skills End and consolidate

with cancer often stir up feelings in the nurse. Nurses’ own accounts of their interactions will be used to identify this unconscious dimension of their communication. It is hoped that the clinical cases will provide useful learning material. All too often clinical examples either show the health professional in a good light or denigrate their skills. Nurses do not so readily share their difficulties but more can be gained if we are prepared to do so. The selection and permissions gained for the clinical material that follows keep faith with this. Helping with fear and anxiety

Case examples Joyce is a 58-year-old single woman who lives alone. The palliative care nurse who visits her on this occasion has known her for 2 years, since her breast cancer was first diagnosed. The nurse

7. Action by person

8. Disengagement from the relationship

has been seeing Joyce weekly, for 3 months, either at home or at the hospital, after it was discovered that she had metastatic spread of her cancer. Joyce has been undergoing a course of chemotherapy but has become increasingly breathless, as the nurse discovers during this planned visit to her home the day before she is due to be seen by the doctor in the hospital clinic. This extract occurs 10 minutes into their half-hour conversation: 195 P.

I’m really bad aren’t I mmm . . . mmm . . .

196 N.

I don’t know Joyce I don’t think you’re getting better

197 P.

No [long pause] oh God oh it’s alright darling [long pause] sorry about this [sounding distressed]

198 N.

That’s alright

182 The experience of cancer 199 P.

What is it the doctor thinks I should do really?

200 N.

Uhm I don’t think she’s made a decision at the moment and I think she’s waiting to see . . .

202 P.

No, alright

203 N.

. . . what the X-ray shows tomorrow . . .

204 P.

Okay

205 N.

. . . Joyce

206 P.

But I’m getting worse

207 N. Mmm I think so . . . what does it feel like to you Joyce? 208 P.

It’s very tight I know it’s worse it’s the breathing that worries me like I feel as if I’m never going to breathe again

210 N.

Mmm

211 P.

They will be able to help me won’t they . . . I can’t go round like this you see not breathing [long pause]

213 N.

I hope we’ll be able to relieve the tightness in your chest but I can’t promise that we’ll be able to take the breathlessness away altogether

215 P.

No

216 N.

I think we’ll be able to make it a bit better than it is at the moment

217 P.

Moment

218 P.

[long pause] but my life is limited isn’t it . . . from the point of view of longevity [long pause]?

220 N.

I think so . . .

221 P.

. . . Months years [long pause]

222 N.

That’s a really difficult thing . . .

223 P.

Mmm

224 N.

. . . to answer Joyce I think probably the person to talk to about that with would be the doctor

Joyce’s breathlessness is a new and frightening feeling for her and induces fear of impending death. This prompts Joyce to seek reassurance from the nurse that something can be done to relieve her breathlessness. The nurse gives Joyce

time to voice her fears (line 198) and gently explores the catastrophic understanding of her impending death (lines 196, 207, 213–214 and 220–224). Unbeknown to Joyce and the nurse the cancer has spread to the bones in Joyce’s rib cage and shoulders and these have collapsed in on her lungs, causing her current breathing difficulties. In the next extract, Joyce gives a vivid description of her embodied experience of the metastatic spread of her cancer: 380 P.

I can’t can’t unbend my shoulders either that’s another thing I, why’s that?

381 N.

I’m not sure about that

382 P.

. . . My shoulders are all hunched up and I can’t

383 N.

. . . Yeh I noticed that

384 P.

I can’t get them straight I have to do like a little old . . . hunch back. It doesn’t straighten out that doesn’t help either . . . it’s uncomfortable for me . . . radiotherapy wouldn’t help me really any more would it?

387 N.

On your lungs

388 P.

No well on my sort of try to do something to my back

389 N.

I’m not sure . . . possibly that’s something else you could talk to doctor about tomorrow I really don’t know what that is

391 P.

You see I go like this [hunches her shoulders]

392 N.

Mmm

393 P

I can’t straighten out can I [long pause] I can’t get straight

394 N.

Mmm [long pause]

395 P.

Oh God I don’t know what to do [tearful]

396 N.

Come Joyce [long pause]

397 P.

I just want to lead my life

398 N.

Mmm [pause]

399 P.

So simple I don’t want I don’t want to ask for very much you see [pause] just want to lead a (. . .) simple life go to I mean I’ve got it’s a very mundane little job but I like it and [pause] and a nice little flat I mean it needs a lot of money spent on it but I like it and

Therapeutic strategies in cancer care 183 I’ve got what I want and . . . and now all this happens [long pause] it’s my mouth’s so sore I can’t eat properly [long pause] I mean I suppose some of these ulcers are on my throat as well probably . . . which doesn’t help 405 N.

Mmm mmm

406 P.

Mmm

407 N.

That will get better

408 P.

Mmm

409 N.

I . . . can assure you that erm yeh [long pause], mmm, [long pause] know this is really hard for you [long pause]

410 P.

I don’t know what to do [pause] or say or think, [long pause] sorry it’s uncomfortable for you here [leaning on the window ledge] . . . but it’s the only way I can

412 N.

. . . I’m fine . . . no don’t worry I’m fine [long pause]

413 P.

They’ll probably give me something tomorrow do you think [pause] mmmm

414 N.

Yeh I hope so . . . try something [long pause] it might be that they could try some radiotherapy [long pause] I don’t know whether they’d be able to do that tomorrow . . .

416 P.

. . . No . . .

417 N.

. . . Its probably unlikely but erm that might help.

At first the nurse takes her cue from Joyce’s description and considers with Joyce different treatment possibilities (lines 387 and 389). There is then a qualitative shift in the nature of Joyce’s expression. From not being able to get her shoulders straight (line 384), she conveys very accurately her all-encompassing anxiety of not being able to ‘straighten out’ and understand her situation (line 393). This reading of the conversation is borne out in Joyce’s explanation that she just wants to lead her life (lines 399–404). It seems that here, Joyce is attempting to reconcile wants for a ‘simple life’ with what is happening to her. Her anxiety and fear overwhelm her and unconsciously she wishes to rid herself of these feelings and for them to be ‘contained’ by the nurse. Joyce cannot bear speaking of her anxieties directly for very long and perhaps not surprisingly returns to

describing her worries about her mouth ulceration and sore throat (lines 399–404). This raises an interesting point about how far the nurse limits or engages her interpretive energy and skills in the face of the symptoms of cancer illness and treatment. In describing her sore mouth at this point Joyce is perhaps giving further voice to her overwhelming anxiety by associating primitive feelings and needs from childhood for feeding and being held. It appears very difficult for the nurse to receive Joyce’s anxious communication at this point and she responds by acknowledging the symptoms Joyce is experiencing and reassures Joyce that these can be alleviated. It is distressing being with someone who is really upset and, just like the people we care for, we have ways of reducing the emotional discomfort. In her own reflection on the conversation the nurse described: The overriding thing is of erhm feeling absolutely helpless in the face of this extreme breathlessness and just and you know hoping against hope that they would actually be able to do something tomorrow but thinking probably they wouldn’t. Poor Joyce. Poor woman, just lying there going ‘huh huh’ and it’s just awful, you can’t do anything.

The nurse continues to discuss the management of Joyce’s symptoms and avoids directly addressing her anxiety. She fears causing Joyce additional distress and perhaps taking away hope. Joyce herself returns to her anxious thoughts after 5 minutes: 473 P.

I don’t know what to think I don’t know what to do (34.0) miserable isn’t it [laughs]

474 N.

Mmm [long pause] you’re doing really well Joyce

475 P.

I’m not really it’s it’s just a miserable life I want no I’ll get there [long pause] to sort to breathe [long pause] if I could just breathe a little is that too much?

476 N.

[long pause] Mmm . . . the tongue I think won’t get better straight away but it will get better that I can assure you it won’t always be like this . . . your breathing we might not be able to get back to normal but I hope that we’ll be able to get it significantly better than it is now

184 The experience of cancer 480 P.

Mmm [long pause] but the tight there isn’t it

482 N.

The tightness yeh . . .

483 P.

The bones is it in the bones?

484 N.

No it’s inside the lungs themselves

485 P.

Oh

486 N.

Some sort of plaques

487 P.

Yes tumour things [pause]

488 N.

Yeh

489 P.

It won’t go away will it?

490 N. No they were hoping that they would be able to erase them with the chemotherapy . . . 491 P.

. . . But I’ve only had two chemos so far

492 N.

I know yeh there is a possibility that

493 P.

I mean are you saying now that maybe the chemo’s not going to do it

495 N.

That’s what they don’t know

496 P.

Mmm . . .

497 N.

. . . but that’s why doctor wanted to see you straight away with an X-ray so she can . . .

498 P.

Mmm mmm

499 N.

. . . Have a good look at what’s happening and see you at the same time

500 P.

I mean it’s only two weeks since I saw the consultant could it happen in such a space of time I suppose it could anything can can’t it

502 N.

Mmm [long pause]

503 P.

I’ll just have to hope that tomorrow I can breathe [pause] because if I can’t I don’t know what I’m going to do [long pause]

505 N.

With regards to getting there

506 P.

Oh no no no I mean just from the point of view of just being able to breathe again . . . oh no I’ll get there

508 N. But tomorrow they’ll be able to do something is that what you’re saying?

512 P.

Mmm uhm

513 N.

That actually . . . the situation as it is right now is . . . not something that you can live with.

In her long pauses and statements Joyce clearly gives the nurse an experience of what it is like ‘not to know what to think or do’. The nurse’s responses (lines 474, 476–479) indicate perhaps that she is at a loss to know what to do or think as well, in the uncertain context of Joyce’s sudden deterioration. Joyce clearly wants the nurse to perform some thinking function for her. The nurse responds in practical ways and with clinical solutions, leaving unanswered Joyce’s question, ‘Is it too much to ask, to just breathe a little?’ It is important to consider the nature of reassurance in helping with fear and anxiety and whether, in the face of worrying evidence to the contrary, reassurance can leave the person feeling unsafe, and at risk of losing confidence in the nurse. It is also important to consider ways in which the nurse might have communicated more strongly her understanding of Joyce’s predicament and feelings. The nurse recognised that the ability to receive the feelings that Joyce engendered in her was the key to future work in helping Joyce with her fear and anxiety. This led the nurse to communicate her understanding of Joyce’s predicament and feelings more effectively than demonstrated in these extracts. This example vividly demonstrates the dynamics of container and contained in attempts to understand. Helping with guilt

Clarrie is 28 years old and has leukaemia. She is married and has three young children. Clarrie has been in hospital for 8 weeks because her disease relapsed after treatment. The nurse has been closely involved with Clarrie throughout her treatment. This extract is taken from an hour-long conversation they had together after Clarrie indicated to the nurse that she was feeling particularly ‘fed up’:

509 P.

Mmm uhm mmm [long pause]

200 P.

My mum scares me . . . she’s the one really upsets me [cries]

510 N.

I think it’s quite important that you emphasise that to the doctor when you see her

201 N.

She’s your mum

Therapeutic strategies in cancer care 185 202 P.

Mmm [crying]

203 N.

It’s just her way of is she angry do you think that it’s happened?

204 P.

I don’t know . . . she’s not saying [pause] I mean she has said to me before that ‘why why you’ . . . I mean I could ask the same question [giggles] I would not ask myself that . . . ‘cos things like that happen all the time and you . . . just because you are not in it you don’t know about it . . . you hear about it like on telly and things [pause] and yeh you think I won’t ask that I think I dread to ask that not towards me but towards other people . . . ‘cos you’re made to feel like rot . . . I think I’ve done this to them [her family]

301 N.

You haven’t done anything to them, Clarrie

302 P.

What do you . . . ?

303 N.

You have got leukaemia through no fault of your own . . . through nothing you’ve . . .

305 P.

No you know what my sister-in-law said to me . . . she said to me that it was my fault

307 N.

Why would it be your fault?

308 P.

. . . I don’t know

309 N.

. . . How could it possibly be?

310 P.

I told my sister that [cries] I thought why . . . and I couldn’t understand . . . I couldn’t understand why she said it I think thinking that I’d done something that’s why I’d got it

313 N. There’s nothing you could have done to make you get leukaemia, little children get leukaemia 315 P.

I know I kept thinking . . . what I kept thinking ‘why’

316 N.

Well believe me . . .

317 P.

If she’d told my husband that can you imagine what he would then start thinking you know [pause] I probably caused it [sobbing]

319 N.

Please believe me you’ve got nothing to reproach yourself about you didn’t cause this leukaemia it just happened to you, you had no say in the matter

321 P.

A grown woman telling me that it’s my fault if I had known something maybe I would have acted sooner

323 N.

But that maybe wouldn’t have altered anything anyway but Clarrie you didn’t know you DIDN’T KNOW you had this last year and you didn’t know when you just felt tired and unwell but . . .

326 P.

Do you [long pause] [cries] when I think about that at the time [cries] I think about that and I’m trying to work out why it was my fault

Clarrie is focusing on the consequences of what she has or has not done to get leukaemia and thus ‘hurt’ her family (lines 204, 311–312). Her sisterin-law personifies the persecutory, blaming part of herself that tells her that she is guilty of bringing the disease on herself and her family. The nurse recognises this self-blaming as a negative and faulty cognition (lines 301, 303) and wants to help Carrie see that her thinking is being fuelled by irrational beliefs and feelings, perhaps of excessive responsibility in relation to the cause of the cancer. The nurse directly challenges Clarrie’s thinking (lines 307, 309) and reinforces less negative, ‘right’ thinking about the onset of her leukaemia (lines 313, 319). It appears from the extract that the illness reevokes painful needs in Clarrie’s family relationships, which are mentioned but not fully articulated or discussed (lines 200, 204–300). Clarrie gives an indication that she is not experiencing her mother as supportive or nuturing and that she resents having to carry the emotional burden of her illness for her mother as well as for her own children. The nurse considered that Clarrie’s negative thoughts had had a strange hold for some time and that she needed to work with Clarrie and some members of her family on this and a number of related issues over a period of several weeks. Together they decided to explore: • how Clarrie first suspected she was unwell • her partner’s and family’s immediate reaction to her diagnosis, including how they had been told and what they each now understood of the diagnosis • what had changed for Clarrie and her partner and Clarrie and her mother, and what they

186 The experience of cancer

had discovered about each other since her diagnosis • the impact of these discoveries on their relationships and parenting • what they now wanted from each other. Helping with anger and hostility

This is an example of low-key verbal aggression by a 45-year-old woman, Susan, in hospital for chemotherapy to treat a recurrence of her breast cancer. Susan’s anger is directed first at the nurses caring for a dying woman on the ward and then at doctors, who she does not perceive consider the individual communication needs of people in their care. She tells the nurse: 64 P.

I’ve been a bit sort of upset at the way erhm . . . she’s looked after very well in terms of being cleaned and turned and whatever but there’s not an awful lot of time erhm that’s devoted to all the little things I think she’s very abrupt but then she has a right to be hasn’t she . . . I mean if you’re on your way out you can be any way you like [pause]

69 N.

It’s not just . . .

70 P.

. . . I sometimes think some people don’t know how to approach someone they are very cheerful and ‘how are you today’ you know and ‘those are nice flowers’ but that’s not what I think someone wants to hear, they want to get down to the nitty gritty you know and talk about what’s happening you know and I think the consultants are not very good at that either . . .

75 N.

Some aren’t always perhaps er I mean you saw Dr Thorn this morning and were you able to get down to the nitty gritty?

77 P.

Well it was all very cheerful in that he said I wouldn’t expect it to come back and he said I’d be very unlucky if it did but I still don’t know whether he’s actually saying that because of all the years of experience or whether he’s saying it because it’s cheerful [laughs] you know and I would like him to talk to me as if he were talking to another doctor

82 N.

What do you think he might have said about you to another doctor?

83 P.

And I think consultants are so erhm used to being jolly that sometimes they forget you want to talk you know brass tacks really

85 N.

Yeh yeh.

86 P.

You know I don’t know everyone is different . . . but I think erhm maybe they should try and gauge what kind of a person you are

88 N.

Yes . . .

89 P.

. . . If you want to hear or not [pause] I’m sure they do try but I think there’s a lot of ‘be better for her if I didn’t’ which makes me cross ‘cos of the sort of person I am . . . I think when they are ill erhm they need special treatment and I think they need to be really asked how they are feeling

93 N.

Yes . . . yes

94 P.

You know and not just say ‘oh how are you?’ . . . ‘good, fine’ you know

95 N.

Well how are you feeling Susan?

96 P.

Well I you know still have seeds of doubt in my head thinking there must be people here who’ve had treatment like I’ve had and then they’ve come back and that’s why I’d like the doctor to be frank because I hate that sort of feeling of of er you don’t have all the facts and I well I think I wanted to sort of make my feelings apparent . . . I was frightened I would appear grumpy and ungracious but if someone’s ill I think then you have to sort of with . . . your yard’s measure of people’s behaviour has to go out of the window.

103 N.

My yard stick is away so can you tell me what sort of feelings you wanted . . . ?

104 P.

. . . You know without being rude or anything I did I am very I’m made [pause] I feel very grumpy and cross

What is immediately striking in this extract is how the language Susan uses portrays her selfidentity. She is reluctant to describe herself in the first person, preferring to use phrases like ‘some people’, and the words ‘someone’ and ‘everyone’ to distance herself from her experience and her feelings of anger, but also perhaps her uncertainty, fear, and anger in relation to the cancer itself. It may be that her anger is emerging, as denial and numbness of the news of her recurrence fade. Anger is often suppressed, perhaps unconsciously, by hospital staff in their attempts to make the environment as positive and cheerful as possible

Therapeutic strategies in cancer care 187

as this woman describes (lines 70–74, 77–81). It is then difficult for the person to express anger or negative thoughts and feelings, especially when staff are doing so much for them. Susan believes that more attention should be given to people’s need and right to be angry and she is critical of false cheerfulness. Susan also seems to have mixed feelings of anger and dependency towards the doctors and nurses, and this can make the role of carers more difficult, as it seems to here. The challenge for the nurse attempting to help Susan to understand her angry feelings is first to help her to verbalise and own them in relation to her own situation. The nurse does this successfully (lines 75–76, 82, 95, 103) and clearly provides a setting in which Susan feels secure enough to voice her dissatisfaction and angry feelings. The nurse does this by hearing her criticisms of care, not being defensive, and by channelling the energy of Susan’s anger into asking for what she needs from professionals, all of which augurs well for Susan’s emotional well-being.

can’t do that erhm [long pause] I’m no use to the kids or Dorothy [wife] I’m not sure whether I should just stay in bed I mean I’ve stayed in bed longer since I’ve been in hospital for the last two days erhm and I’ve never felt more tired than I do now I feel really strange so I’m not winning that either 708 N.

Yes

709 P.

I’m getting a bit tired of it all [pause] I just want to be made better

710 N.

Yes

711 P.

I can’t do much at all at the moment and I’m quite an active person normally in fact I’m supposed to be organising a camp in two weeks’ time

713 N.

Are you? Where are you going to?

714 P.

In Sussex but I am getting quite stupified with all these pills I have been taking [pause] it doesn’t look as if I’ll get there [pause] and I feel very tired and well . . .

716 N.

. . . Do you think it would be wise to have a period when you’re resting and also a time when you get up and potter around?

718 P.

Mmm

719 N.

Because then when you are resting it would be proper rest instead of just lying in bed

721 P.

I’ve thought of that but what happens is my staying vertical is that my legs start to swell up and all my stockings start to cut in

723 N.

But the other thing is you can sit out in the garden for a little while as long as you keep your feet up and er I can sort out a footstool

725 P.

Oh . . . that yes would be helpful

Helping with a depressive response

An example of a nurse helping with a depressive response occurs when Tony, a 52-year-old man with myeloma, has been describing the problems he has been having walking with crutches and then using a wheelchair, and remarks to the nurse that ‘I have to keep trying, I’m afraid, that’s me’. He follows this with: 674 P.

I suppose in a way I’m worse off [long pause] I’m my own worst enemy in a way [pause] well I don’t know sometimes I ought to rest more than I do erhm I don’t I keep getting into this model where I rest like I use the wheelchair and I stay in it all day long faithfully and then I try and walk . . . I’ve got stiff and stuff so I think well try being out of the chair a bit more and then you get tired and you want to sit in the chair and I don’t know which end of the candle to put out

700 N.

Mmmm I see

701 P.

It’s very difficult er whether it’s just me getting worse this is what I was saying I get depressed I’m getting worse and worse and I don’t know which way to go [sighs] erhm what I’d like to do is just sort of ignore the whole thing and just get on with life but I

Tony uses the image of a candle (line 684) to represent the essence of his experience and his pronounced feelings of unhappiness. Instead of burning the candle at both ends, with its youthful connotations, Tony does not know which end of the candle to put out. The balance between fighting the illness and yielding to its implications has become dysfunctional for him. The nurse needs to work at Tony’s own pace as much as possible, while being prepared to shift this balance when what is happening seems to be inappropriate.

188 The experience of cancer

Tony is ‘still trying’ and the nurse encourages this (lines 716, 723–724) but perhaps does so by denying the seriousness of how Tony feels. It is the physical humiliation of the illness that disempowers Tony as he struggles to manage his pain and fatigue. For Tony to hold in his mind the incompatible images of his current state and his previous health is painful, and the temptation for both him and the nurse is to switch the focus of attention onto something else or fail to take the implications on board, which avoids the distress (lines 715–716). In this excerpt, the nurse recognised that he found it uncomfortable to confront what the physical changes of the illness meant for Tony’s self-image, in terms of the value Tony placed on himself as a father of three young adults setting out on their careers, and as a husband. The nurse also recognised just how much Tony had revealed of his underlying concerns and sadness in this 45minute talk. It is important to be aware of the ways we screen out pain and ask ourselves whether we inhibit the person exploring uncomfortable ideas by the methods we use to reduce our own exposure. In his future work with Tony, the nurse planned to empathise with Tony’s concerns and to provide a comforting and supportive context so that Tony could be upset if he wished. Through more careful listening the nurse thought that, although he could not take away Tony’s sadness and loss, he could work with Tony to shift the emphasis in his narratives from one of dependency to one of greater agency and sense of control. Tony placed considerable value on his expertise as an engineer, husband and father, and felt that helping strategies about acceptance and accepting his continuing responsibilities as a father and husband (his responsibility to help his wife and children face his illness, for example) may help to increase his sense of self-worth. The nurse considered how some of this work might take place with another family member, intrinsic to Tony’s sense of self-worth. Understanding how gender constructs our lives and our understanding of the meaning of care is growing. In this clinical example, a male nurse is talking with Tony and it is to this nurse that Tony is able to voice some of his worries. Tony’s illness and incapacity presents an enormous challenge to

his gendered identity. Bringing thoughts about gender overtly into discussions with Tony, and his preconceptions about providing and receiving care, might provide an alternative lens through which to explore his situation. Therefore, it may be useful for the nurse to explore with Tony how being a man influences his response to cancer. Helping when treatment fails

Phyllis is a 75-year-old woman with endometrial cancer. Phyllis suspects that the cancer might have spread: 442 P.

I suppose I will find out when I’ll get sorted out in the end

443 N.

. . . Yes [pause] but what would I mean what if they turned around and they said there’s nothing really we can do about it?

445 P.

There’s nothing I can do about it is there

446 N.

No . . . ’cos I mean ’cos that ’cos that could be a possibility I mean ’cos you have been in a week and if there was anything they were going to do

448 P.

That’s what I mean yeh

450 N.

They’d erhm [pause]

451 P.

I mean if I’ve got it somewhere else then it’s

452 N.

You’ve obviously thought about that

453 P.

Yeh well you ‘ave to don’t ya [long pause] [clears throat] I mean it’s hard

454 N.

[long pause] Oh dear I know

455 P.

[pause] It’s not that I’m frightened I am frightened but I’m not frightened if you know what I mean

457 N.

[long pause] Yes

458 P.

Err

459 N.

What are you frightened of?

460 P.

Oh I don’t know

461 N.

It’s the not knowing it’s

462 P.

I don’t know what I am frightened of I mean . . . I mean I don’t know if it’s er [pause] I don’t know I really don’t know

464 N.

The uncertainty or

Therapeutic strategies in cancer care 189 465 P.

Well yeh in one way [pause] erm but erm [long pause] depends what I am you know . . .

466 N.

Yeh

467 P.

. . . I think it’s more that [pause] if it has gone inside somewhere else

468 N.

Yes

469 P.

. . . How am I gonna feel how am I gonna get you know what I mean?

470 N.

Yes it’s . . .

471 P.

You know am I goin’ to be really ill and in pain or you know what I mean?

472 N.

Yes

473 P.

You know the things you you the things you you know what I mean?

474 N. [long pause] There are things that we can deal with when they come 475 P.

Yes yes I mean you know I think to myself I’m just going to end in a wheelchair that’s it . . . a nice wee chat [laughs]

478 N.

[laughs]

479 P.

Your little machine [referring to the taperecorder]

In this extract the nurse introduces bad news, i.e. news that materially alters Phyllis’s view of her future. She does this in a supportive way (lines 443–444, 446–447). A person may temporarily block news they cannot take, but at least the information is made available so that they can use it constructively when they are ready. Here the nurse gives time for the idea she has raised to sink in and is not frightened of unleashing a reaction that might be difficult to deal with in the conversation. Phyllis does not block out the news by lightening the mood and changing the topic of the conversation until line 477. Up to this point she explores some of her thoughts about treatment failure. Even though the nurse tries to anticipate what Phyllis might be feeling (lines 461, 464), Phyllis does express her own particular concerns and uncertainty within the context of the supportive conversation with the nurse. Phyllis sets the agenda for subsequent conversations with this particular nurse. She wanted to talk more fully about what

might happen to her as she got closer to death and how the family and friends could help her at home. The nurse agreed to do this in three halfhour conversations before Phyllis was discharged the following week.

Conclusion Despite the urgency of the possibility of death for some cancer patients, it is important that nurses’ therapeutic strategies proceed at a pace that feels safe, a pace dictated by the person and the nurse. Decisions about what feels safe to share rest with the individual and their family, and this also influences the timing and pacing of the work. Creating space for the person to gain some understanding of their own response to cancer can help them to retain competence and integrity. The extracts above are powerful reminders of the fear, anxiety, guilt, and humiliation that can disempower people as they struggle to manage pain, discomfort, fatigue, and disfigurement from cancer. It is therefore essential that we all examine what we can do in our different contexts to help and empower the people we meet in our work. This includes ensuring that our own authority and ‘knowingness’, manifest in a dogmatic application of our knowledge about cancer illness, do not lead to sterile, unhelpful interpretations of experience that unwittingly undermine the dignity of individuals. All too easily we can find ourselves responding to people in terms of our familiarity with a certain theory or our clinical experience. We then attach to the person the understanding that we have gleaned elsewhere, even though it may not apply to this particular individual. We are most likely to engage in clichéd thinking about people when we feel insecure about our clinical understanding. By prematurely believing we recognise what the person is communicating, even if we don’t, we can preserve the appearance of being competent. There is a danger in this: that we identify worries on the sole basis of similarity rather than from a genuine process of collaborative, consensual working with an individual. The pitfalls of preconceptions are a hazard, and not only for the inexperienced nurse. A similar

190 The experience of cancer

danger lies in wait for the experienced nurse who might have got into a rut with his or her thinking, or be a bit too sure. It is so tempting to use short cuts to insight based on what has made sense with other patients, particularly when we are working in very busy clinical settings. Effective clinical supervision is an essential venue for prompting us to re-orientate our thinking and question assumptions we might hold about a person with cancer, so that we remain receptive and responsive to them and feel supported in our work.

References 1. Cooper C.L. and Watson M. (eds.) (1991). Cancer and Stress: Psychological, Biological and Coping Studies. Chichester: Wiley. 2. Barraclough J. (1994). Cancer and Emotion: A Practical Guide to Psycho-oncology, 2nd edition. Chichester: Wiley. 3. Greer S. and Watson M. (1987). Mental adjustment to cancer: its measurement and prognostic importance. Cancer Surveys 6, 439–451. 4. Kreitler S., Chaitchik S. and Kreitler H. (1993). Repressiveness: cause or result of cancer. Psycho-oncology 2, 43–54. 5. Doan B.D. and Gray R.E. (1992). The heroic cancer patient: a critical analysis of the relationship between illusion and mental health. Canadian Journal of Behavioral Science 24, 253–266. 6. Zorza R. and Zorza V. (1980). A Way to Die: Living to the End. London: Deutsch. 7. Duncker P. and Wilson V. (eds.) (1966). Cancer Through the Eyes of Ten Women. London: Harper Collins. 8. Burnard P. (1994). Counselling Skills for Health Professionals, 2nd edition. Campling J. (ed.) Therapy in Practice Series. London: Chapman and Hall. 9. Jacobs M. (1988). Psychodynamic Counselling in Action. London: Sage. 10. Tschudin V. (1995). Counselling Skills for Nurses, 4th edition. London: Baillière Tindall. 11. Altschuler J. (1997). Working with Chronic Illness: A Family Approach. London: Macmillan. 12. Moorey S. and Greer S. (1989). Psychological Therapy for Patients with Cancer: A New Approach. Oxford: Heinemann. 13. Judd D. (1995). Give Sorrow Words: Working with a Dying Child, 2nd edition. London: Whurr. 14. Cox M. (1988). Structuring the Therapeutic Process: Compromise with Chaos. London: Jessica Kingsley.

15. Gregory J. (1996). The Psychosocial Education of Nurses: The Interpersonal Dimension. Aldershot: Avebury. 16. Casement P. (1985). On Learning from the Patient. London: Routledge. 17. Egan E. (1994). The Skilled Helper: A Systematic Approach to Effective Helping, 5th edition. Belmont, CA: Brooks/ Cole. 18. Murgatroyd S. (1985). Counselling and Helping. London: Routledge. 19. Mearns D. and Thorne B. (1988). Person-centred Counselling in Action. London: Sage. 20. Nelson-Jones R. (1993). Practical Counselling and Helping Skills, 3rd edition. London: Cassell. 21. Klein M. (1937). Love, Guilt and Reparation and Other Works, 1975 edition. London: Hogarth. 22. Kelly G. (1955). The Psychology of Personal Constructs, Vols 1 and 2. New York: Norton. 23. Perls F. (1969). Gestalt Therapy Verbatim. Lafayette, CA: Real People Press. 24. Berne E. (1964). Games People Play. Harmondsworth: Penguin. 25. Harris T. (1973). I’m OK You’re OK. London: Pan. 26. Rogers C.R. (1951). Client-centred Therapy. Boston, MA: Houghton Mifflin. 27. Ellis A. (1962). Reason and Emotion in Psychotherapy. New York: Lyle Stuart. 28. Krumboltz J.D. and Thorenson C.E. (1969). Behavioural Counselling: Cases and Techniques. New York: Holt, Rinehart and Winston. 29. Bandler R. (1985). Using Your Brain – For a Change. Moab, UT: Real People Press. 30. Glasser W. (1965). Reality Therapy. New York: Harper and Row. 31. Ferruci P. (1982). What We May Be. Wellingborough: Thorson. 32. Freud S. (1938). An outline of psychoanalysis. In Strachey J. (ed.) The Standard Edition of the Complete Psychological Works of Sigmund Freud, Vol. 23. London: Hogarth. 33. Bion W.R. (1962). A theory of thinking. International Journal of Psycho-analysis 43, parts 4–5. 34. Beck A.T. (1976). Cognitive Therapy and the Emotional Disorders. New York: International Universities Press. 35. Frankl V.E. (1959). Man’s Search for Meaning. New York: Beacon Press. 36. Silver R.L. and Wortman C.B. (1980). Coping with undesirable life events. In Garber J. and Seligman M.E.P. (eds.) Human Helplessness: Theory and Application. New York: Academic Press, pp. 279–340. 37. Brody H. (1987). Stories of Sickness. New Haven, CT: Yale University Press. 38. Linde C. (1993). Life Stories: The Creation of Coherence. Oxford: Oxford University Press.

Therapeutic strategies in cancer care 191 39. Segrave E. (1995). Diary of a Breast. London: Faber and Faber. 40. Butler S. and Rosenblum B. (1994). Cancer in Two Voices. London: Women’s Press. 41. Picardie R. (1998). Before I Say Goodbye. London: Penguin. 42. Morrison B. (1993). And When Did You Last See Your Father? London: Granta Books. 43. Dennison A. (1996). Uncertain Journey: A Woman’s Experience of Living with Cancer. London: Patten Press. 44. Ortony A. (1993). Metaphor, language and thought. In Ortony A. (ed.) Metaphor and Thought. Cambridge: Cambridge University Press, pp. 120–207. 45. Lakoff G. and Johnson M. (1980). Metaphors We Live By. Chicago, IL: University of Chicago Press. 46. Sontag S. (1991). Illness as Metaphor. Harmondsworth: Penguin Books (first published in 1978). 47. Stacey J. (1997). Teratologies: A Cultural Study of Cancer. London: Routledge. 48. Savage J. (1995). Nursing Intimacy: An Ethnographic Approach to Nurse–Patient Interaction. London: Scutari Press. 49. Bailey C. (1996). Derrida, de Man, Habermas: Implications for Qualitative Analysis of Interviews in Cancer Care Research. A Methodological Study. MSc thesis, University of London.

50. Froggatt K. (1998). The place of metaphor and language in exploring nurses’ emotional work. Journal of Advanced Nursing 28, 332–338. 51. Lanceley A. (1995). Emotional disclosure between cancer patients and nurses. In Richardson A. and Wilson-Barnett J. (eds.) Nursing Research in Cancer Care. London: Scutari Press, pp. 167–188. 52. Kleinman A. (1988). The Illness Narratives: Suffering, Healing and the Human Condition. New York: Basic Books. 53. Mishler E.G. (1986). Research Interviewing – Context and Narrative. Cambridge, MA: Harvard University Press. 54. Gilbert A. (1994). Personal Communication of Transference and Counter Transference. London: Tavistock Centre. 55. Futterman A.D. and Wellisch, D.K. (1990). Psychodynamic themes of bone marrow transplant. Haematology/Oncology Clinics of North America 4, 699–709. 56. Emanuel R.B. (1990). Counter-transference: a spanner in the works or a tool for understanding. Journal of Educational Therapy 3, 3–12. 57. Bion W.R. (1962). Learning from Experience. New York: Jason Aronson. 58. Emanuel R.B. (1992). Personal Communication on Containment, Cure, Care or Control. London: Tavistock Centre. 59. Carkhuff R.R. (1987). The Art of Helping, 6th edition. Amherst, MA: Human Resource Development Press.

Part 3

The Experience of Treatment

194 The experience of treatment

Introduction Cancer, its construction, and society’s response to it, has been highlighted as pervasive and problematic. Characterised by fear and uncertainty, this response shapes the very environment in which people with cancer find themselves, and has been explored in the preceding chapters. The experience of having cancer treatment is much less evident in the cancer literature than the events surrounding being given a diagnosis of cancer. Instead, the focus has been on the efficacy of cancer treatment, measured as the proportion of people who will survive 5 years from the point at which they were diagnosed. When oncology emerged as a medical specialty in the 1950s, survival from cancer of any type was relatively poor; few people would expect to survive their illness. A number of critical developments in cancer treatment have transformed the chances of surviving a number of cancers – from a situation of near-certain death, to the possibility of cure. This has been particularly evident in childhood cancers, some of the leukaemias, and testicular teratoma. Early diagnosis, accurate staging, and multimodal therapy (the use of multiple cancer treatments: surgery, chemotherapy, radiotherapy; and multiple-agent rather than single-agent chemotherapy) have made progress in cancer treatment possible. In other situations, cancer treatment is increasing in sophistication so that some of the side-effects and difficulties of treatment have been reduced. More recently, developments in molecular biology and genetics have made a vast new range of treatments possible. These new treatments, and in particular issues around cancer genetics, are already presenting challenges and dilemmas to those working in cancer treatment settings. Advances in molecular biology have led to the understanding of cancer as a genetic disease (not to be confused with an inherited disease); although inherited cancers are the focus of a large research effort, these probably only account for about 5– 10% of all cancers and are discussed in Chapter 16. The genetic basis of cancer suggests a model whereby cancer initially develops from cells that have undergone a series of genetic mutations or alterations. As a result, cells become unable to

respond to intra- or extracellular signals that control proliferation, differentiation and cell death. According to Hill, cancer treatment can be thought of as adding negative signals to the cellular environment, and thus arresting or inhibiting tumour cell growth and multiplication.1 It is hoped that these will prevent the development of further cancer cells at the originating site, or sites of metastatic growth at any other site in the body. The object of cancer science is to develop new and better methods of preventing the growth of cancer cells. The reality for people in cancer clinics is rather different, since it is impossible to detect cancer cells within the body once a tumour has been removed; cancer treatment is inevitably sometimes given where little is known about whether it is needed for any given individual. This can only be projected through estimates of risk, based on studies of cancer populations. Here lies a dilemma for the treatment team that is difficult to convey to people facing the devastating news of a cancer diagnosis; the personal accounts presented throughout this section convey the difficulty for people of living with this uncertainty. Cancer treatment is an uncertain venture and is often experimental. The extent to which treatment will be effective in preventing future cancer spread is often unknown, yet it involves many side-effects both at the time of treatment, or in the long term, such as infertility or the risk of developing a second cancer, or permanent disfigurement or disability. Little is known about how people with cancer make choices about treatments in the light of their own risk of developing progressive cancer at some future date. This, when accompanied by the fear engendered by cancer, creates a cocktail of anxiety mixed with various personal and professional agendas, and makes genuine partnership in planning care and treatment difficult. Studies of the quality of life of people undergoing cancer treatment have used questionnaires to evaluate the impact of treatment on the individual. The effects of cancer treatment on an individual’s ability to function, the physical and emotional symptoms they may experience, and the social and psychological sequelae of cancer are reported by the patient, usually through a series of rating scales. These studies have documented

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the many effects of cancer and its treatment but, unfortunately, they have tended to be seen as simply an adjunct, or additional piece of data to be collected alongside survival data, for monitoring the side-effects of cancer therapies. By being combined with side-effect data, the relevance and impact of these data have been reduced in importance, so that insufficient information exists regarding the problems and difficulties that accompany cancer treatment. Studies of quality of life in people undergoing cancer treatment have offered little insight into the turmoil and confusion surrounding cancer treatment, or the sheer difficulty of living through the devastating effects that it can have on daily life. The purpose of this section is to provide insights into the experience of cancer treatment through the use of personal accounts. Information is also presented on different treatment

modalities and strategies for managing the problems people face while undergoing treatment. Nursing is presented as central to managing the experience of treatment, both emotionally and physically. An increasing number of nursing research studies are being undertaken into the problems caused by cancer treatment, and findings from these studies are presented throughout. Nurses are making contributions to the science of cancer treatment – in particular, in exposing the need for a more person-focused culture in cancer treatment.

Reference 1. Hill R.P. and Tannock I.F. (2005). Introduction to cancer biology. In Tannock I.F. and Hill R.P. (eds.) The Basic Science of Oncology, 4th edition. New York: McGraw Hill.

CHAPTER TEN

The experience of treatment Lynne Colbourne

‘Treatment’ refers to the therapies that are used with the aim of eradicating cancer cells, such as radiotherapy and chemotherapy. However, the experience of cancer treatment cannot be explored in isolation, it needs to be considered alongside the process of obtaining a diagnosis, undergoing staging investigations, follow-up and aftercare, as each of these are also part of the treatment experience and together are often described as the ‘cancer journey’ or treatment pathway. The treatment pathway (see Figure 10.1) is not always straightforward, and may involve a number of investigational tests, and single, or more often combined or sequential, treatments. This chapter will explore the treatment pathway by drawing on the direct experience of people with cancer and detailing clinically relevant aspects of therapy and care. The text boxes containing personal accounts provide excerpts from the narrative of men (diagnosed with prostate or testicular cancer) and their spouse/partners, who participated in a qualitative, prospective case study.1

Diagnosis and staging Michele Angelo Petrone was diagnosed and treated for Hodgkin’s lymphoma, and expressed in words and paintings his experience of cancer and treatment. This work is available as a book and presents a powerful insight of the emotional impact

of the cancer journey. A brief excerpt from this book is presented in Box 10.1. Box 10.1 The beginning of the cancer experience Between night and day As time goes by, night follows day, and day follows night – a natural cycle without beginning, without end and without gaps. Life’s cycle continues without interruption, or at least it should do. Suddenly illness arrives, uninvited, unexplained. I found myself caught between life and death, light and dark, banished to an unknown place – between night and day. The illness forced itself into my life where there was no place for it. The arrival of illness stole a place and time that should have been destined for better things (p.6). Reproduced with permission from Michele Angelo Petrone (2003) The Emotional Cancer Journey. Brighton: MAP Foundation. www. mapfoundation.org.2

The period leading to confirmation of a cancer diagnosis and subsequent staging investigations is a time of oscillating emotions, fear and uncertainty, where normality and control are lost and there is shock that an apparently ‘normal’ body has malfunctioned in some way. Each person has an individual perception of what cancer means to him or her, a mental, socially constructed interpretation that is brought to the cancer experience.3,4 Some may have previous knowledge of cancer (commonly negative) through someone close to them. Previously

198 The experience of treatment

Single or multiple treatment

Screening services Emergency admission. Investigation of acute symptoms

Diagnostic and staging investigations

Surgery Treatment plan

Chemotherapy Follow-up

No further treatment required

Long-term remission/maintenance therapy

Radiotherapy GP investigation of symptoms

Hormone therapy

Second-line treatment

Staging/restaging investigations repeated as necessary

Figure 10.1

The treatment pathway.

constructed thoughts and beliefs surrounding cancer can affect the degree of emotional impact cancer has. This is a key point of the pathway where the person affected by cancer and those close to them may need an opportunity to talk through their fears of cancer and to clarify understanding of their situation to resolve any potential misconceptions. The management of the pre-diagnostic phase, cancer diagnosis, and staging can be critical in shaping the view and perceptions of people facing cancer, and their family members throughout treatment and beyond.1,4,5 Some will be satisfied with the care and information they receive. However, if the opposite is the case, expressions of frustration, anger and a wariness of being let down by the health care system or health professionals can arise, and may persist throughout the pathway or with time.1,6,7 Difficulties can arise during the process of diagnosis or staging if: • an individual considers symptoms they experienced before diagnosis were not taken seriously or investigated appropriately • investigations were requested by clinical staff but there was in delay in investigations or tests commencing, or unacceptable waiting times were experienced

• there is poor management of this phase of the pathway because of lack of information, communication, explanation, or co-ordination of care. Without appropriate management and planning of the staging process, diagnostic tests can seem disjointed events, isolated instances of investigation of different parts of one’s body. The personal accounts illustrated in Personal account 10.1 provide differing experiences of obtaining diagnostic test results. These narratives highlight the importance of health professionals understanding the emotional implications of diagnostic tests and the need people facing a diagnosis of cancer have for information. Not knowing what is wrong and feelings of uncertainty dominate at this phase, and staff based in radiology and pathology departments need to deal empathetically with people undergoing tests and investigations where cancer is suspected. When exploring the experience of men diagnosed with testicular cancer Jones and Payne offered the hypothesis that people under stress seek safety signals.8 The study identified that a lack of opportunity for positive reinforcement of such safety signals increases anxiety levels. Attempting to assert oneself in a crisis situation to gain control is well known.9–14 From the point of

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Personal account 10.1

Diagnosis1

1. Luke was 30 years old when he noticed a lump on his breast. . . . he [breast surgeon] said that it looked like a hormone imbalance [and then he said] ‘but we’ll have an ultrasound scan on the breast and testicles, just you know [to be sure]’ but he didn’t explain why, and I went back to work, I thought ‘fine I’m sorted . . .’. Luke then attended for an ultrasound scan: . . . I had my ultrasound scan and they examined my testicles first, and they went to my left breast, and my right breast, and he did my stomach . . . and I’m thinking he’s not doing my stomach, I’m not down for that, I remember that letter! So I said ‘Is there a problem here?’ And he said, ‘Oh yes you’ve got a tumour’, and I thought ‘a tumour?’ I thought ‘oh God major panic’, he stopped and he said, ‘Oh, no need to worry, it’s the best type, erm, go and get changed . . .’. The radiologist returned and took blood tests and apologised that the consultant couldn’t see Luke until later that week, but Luke was confused: . . . I said, ‘So I’ve got a tumour in my left breast?’ . . . and he said, ‘No, no, no it’s in your testicle, it’s in your testicle’, and that was it! He walked away, and I was, I thought, ‘oh shit I’ve got a tumour’. . . . I had three nights and two days thinking ‘I’ve got a tumour, isn’t cancer a tumour? is it a malignant tumour? is it a large one? is it a small one? . . .’ I went on to NHS Direct and the opening sort of paragraph, on the internet, is, this is the biggest killer between the ages of 15 and 30! At a time when this man desperately needed explanations there appeared to be no one knowledgeable to contact. 2. Colin was 53 years of age when he attended for a well man’s check at his general practitioner (GP) surgery. Blood tests suggested prostate cancer, and this was confirmed with a prostate biopsy. The following excerpt was taken from Colin’s description of one of his staging investigations: . . . I had a wonderful man who was in charge of the [bone] scan, and when I’d finished, ’cos he obviously knows how worried people are, when I’d finished, he said ‘You haven’t heard this from me’, he said ‘but it’s clear’. So I was able to walk out of that hospital and I felt good.

diagnosis, individuals may search for positive information to resolve negative preconceptions of cancer, for example seeking reassurance from information that reinforces the potential of successful cancer treatment.1,8,12 How a person seeks and attempts to gain control over their situation is variable. People with cancer, and family members, can have different practical, emotional, and supportive needs and require varying levels of control/empowerment over the situation. People tend to ‘box off’ the cancer experience into manageable parts (for example by focusing on the immediate challenge of ‘getting through’ treatment) to cognitively deal with the experience.1,3,4 Early access to a knowledgeable health professional can assist individuals in making sense of their situation, and in clarifying understanding of staging and prognostic information as results become available. Nurses are in an ideal position to help individuals and families by providing opportunities for reassurance and optimising coping strategies and this can include: • offering information in ‘chunks’ at appropriate and regular time points • initiating referral as appropriate to members of the multiprofessional health care team • providing awareness of the benefits of sharing or learning about the cancer experience with others (for example via support groups or ’phone buddy programmes). Taylor and Lobel describe this form of coping strategy as social comparison.15 Comparison is sought with a person in a similar situation or someone considered a survivor to provide inspiration or hope. Gray et al. identified this process occurring with men diagnosed with prostate cancer, and refer to it as ‘providing models of recovery’.16

Diagnostic tests Formal diagnosis requires the collection of data through a series of tests, investigations, tissue specimens obtained from biopsy or needle

200 The experience of treatment

aspiration to provide histology, and different scans for radiological reports. For some cancers the diagnostic pathway is simple with limited investigations, while for others a clear diagnosis is not always easy to determine. The primary site of a tumour may be confirmed quickly, but confusion and delay might occur as staging investigations are carried out. Diagnostic tests are frequently managed on an outpatient basis, and performed at various hospital sites by different health professionals. Over the last 10 years, greater coordination of this pathway has occurred through diagnostic and treatment planning being undertaken by cancer site-specific multidisciplinary teams. However, this does not include pre-diagnostic tests undertaken in primary care or people being investigated for potentially rare tumours (where initial investigations will be performed locally, but ongoing referral and cancer treatment will be administered by multidisciplinary teams at a regional/tertiary cancer centre). As cancer can develop from any organ in the body and present as one of more that 100 different histological types, accurate diagnostic data are essential in offering the appropriate treatment. Before any test, a detailed physical examination and medical history is undertaken. The purpose of medical investigation is to locate the primary cancer and to classify its histology and locate any spread (and, if present, the extent of metastases). Staging of cancer normally follows the internationally recognised TNM system (see Box 10.2). The TNM staging system is a common predictor of prognosis but each cancer will have other prognostic indicators in addition to the TNM system. For example in prostate cancer the biopsy histology findings are graded and calculated as a Gleason score (4 or below low grade; 5–7 intermediate; 8–10 high grade and poor prognostic factor).18 The level of the serum tumour marker, prostate-specific antigen (PSA), is also an essential addition to the TNM information. At specific intervals during treatment, staging investigations are commonly repeated (as identified by treatment protocols) to measure the cancer response to treatment, to inform decisions regarding the need for additional therapy, and

Box 10.2 TNM staging/classification of solid malignant tumours The classification describes the anatomical extent of the disease by using three components: • T – the extent of the primary tumour • N – the absence or presence (and therefore extent) of regional lymph node involvement • M – the absence or presence of distant metastases. Each of the above is assigned a number to indicate the extent of local and distant spread of a particular tumour: T1, T2, T3, T4, N0, N1, N2, N3, M1 (for some cancer types these classifications will be subdivided even further, e.g. T2a, T2b). Other categories include: • • • • • • •

Tis T0 Tx Nx M0 Mx G1

– carcinoma in situ – no evidence of primary – primary cannot be assessed – nodes cannot be assessed – no evidence of metastases – metastases cannot be assessed – well differentiated.

Adapted from Neal and Hoskin (1994).17

post-treatment to monitor tumour absence or to investigate signs of cancer progression or recurrence. To obtain the information required to complete a patient’s TNM staging, various clinical investigations will be performed. These investigations provide greater visibility of the internal workings of the patient’s body to clinical staff. The patient and their family will also attempt to use the findings as a means of interpretation of the seriousness of the situation, to monitor the effectiveness of therapy, and interpret the body for signs of metastases.10,19–21 When exploring the experience of men with prostate cancer, Kelly illustrated how a man’s cancer experience was lived through the response of their tumour to cancer treatment.19 Information gleaned through clinical investigations is a primary way of making sense of the situation, and health professionals can use these findings to explain, inform, and ‘cancer educate’ patients in relation to their particular situation.

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Making decisions about treatment Accurate diagnosis and staging is important in the management of cancer, by informing treatment options and decisions. With advances in cellular science and imaging technology the level of information available from staging investigations is increasingly complex. Health professionals often have a superior knowledge of the disease process, and intentionally or unintentionally may use technical/medical language when discussing treatment options with people with cancer. The risk is that people with cancer can become excluded from treatment decisions because of this complexity. Silverman suggests that the problem is not simply solved by developing a more open dialogue between doctor and patient or creating a more straightforward language – the issues are much more involved.22 Increasingly the costs of health care and particular treatments drive decision making, and the availability of particular treat-

Prostate-specific antigen (PSA) blood test. Digital rectal examination

Transrectal ultrasonography (TRUS) prostate biopsy. To obtain histology and determine Gleason prognostic score

Staging bone scan

ments may be determined not only by evidence of their effectiveness but also by issues such as affordability within the health care system.23 Deciding upon a treatment plan can be more complex with certain tumour types. Clinical trials have determined ideal therapeutic regimes (for maximum disease-free survival) in the treatment of testicular teratoma or seminoma, and therefore choices that need to be made in relation to prognosis are potentially less complex. However, this is not the case for other tumours such as breast or prostate cancer where research data are less prescriptive. For example with prostate cancer, although staging, prognostic indicators, and performance status might direct treatment options to a degree, a man will still be offered a multitude of treatment choices and these are depicted in Figure 10.2. To illuminate this situation further, Personal account 10.2 provides a personal account of the difficulties experienced in being offered a treatment choice.

?‘Watch and wait’

?Surgery

Staging MRI scan of pelvis (minimum of 3 weeks post-biopsy)

? Radiotherapy

? External beam

? Brachytherapy

? Commence hormone therapy. If yes which product – a gonadorelin analogue (e.g. Zoladex® injection) or one with an anti-androgen action (e.g. cyproterone acetate oral medication)

Figure 10.2 Prostate cancer treatment pathway: potential treatment options.

? Commence or continue hormone therapy. If yes which product and how long to continue therapy

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Personal account 10.2

Treatment choices1

At the age of 57 Julian had been diagnosed with prostate cancer after attending a routine health check. Julian and his wife had sought several second opinions and had desperately tried to seek the treatment Julian considered personally appropriate. Julian had finally located a consultant oncologist he had faith in and had commenced a three-month course of hormone therapy in preparation for external beam radiotherapy. . . . the other thing I heard a few times, that, what I got in the very early stages is, it’s your choice as to how the treatment is, and in hindsight it’s wrong. You know I’m an [states profession], and I don’t go along to my clients and say ‘What do you want and I will [produce it] for you’, I am not a parrot, and I expect the consultants to lead you, a lot of them said ‘No, it’s your choice’ and I defy you, I defy anybody to be in a rational mind and make choices, you can’t do it, I couldn’t do it, and it’s just I’m trying to think, I’ve got to make a choice here, on this most monumental, you know, treatment . . . I need to be guided, but my reaction was, what would you do in my circumstances, but it’s [left as] your job, it’s a load of cobblers quite honestly, the best they could say is ‘I strongly recommend, you know, in these circumstances everything points to, you should go this route’ you know. In hindsight I could have gone into brachytherapy, ’cos we pushed very hard for it, and thank God, I mean it was a low point going up to [that centre], but in hindsight with that PSA I shouldn’t have been having brachytherapy and the guy wouldn’t do it . . . so yes I would make a very strong recommendation that people aren’t asked or told it’s their choice and what do you want to do, ’cos the only thing you want to do is, go backwards or get out you know, tell me I am cured, but how do you get cured, I would defy anyone to choose . . . you look to be advised, and directed in a certain route, I accept in the end that you can’t tell them that you must have this . . .

A number of studies have been undertaken to explore the desire of people newly diagnosed with cancer to be involved in making decisions about their treatment.23–28 Degner and Sloan developed a tool for evaluating such preferences, and identified a continuum of scenarios from the desire to play an active role in decision making, through the desire for a collaborative or shared role, to the preference for a passive role, where the physician or other health professionals or carer is the primary

or sole decision maker.23 The scenarios of this continuum were evident in the findings of a study exploring the experience of women newly diagnosed with breast cancer. Beaver et al. suggest an important distinction between participation and a desire to make decisions about treatment, and the need for information.25 In their study of women with breast cancer they reveal that women express a high desire for information but not necessarily for active participation in decisions about which treatment they should have. There is obviously an immense challenge for health professionals in providing support for people with cancer in relation to treatment choices. An awareness of the potential roles people with cancer and family members might adopt should inform this process. Additionally, time, information and repeated opportunity for discussion (and possibly second opinions) need to be factored into the treatment pathway.

Improving diagnostic care provision In the UK since 1995 when the first comprehensive report recommending how cancer services should be organised was published,29 there has been a series of guidelines published for the clinical management of specific cancers, and numerous government reports that dictate the implementation of initiatives and targets to rectify deficiencies in cancer care provision. A key focus has been to reduce waiting times for diagnostic/staging investigations and also the time from urgent referral for investigation to commencement of treatment (this is specified to be no more than 62 days) in order to deliver faster diagnosis and treatment, and reduce delays in diagnosis and the commencement of treatment. Extended nursing roles are being developed as part of initiatives to meet targets for waiting times for diagnosis and the commencement of treatment. Increasingly nurse roles now include performing diagnostic tests. For example: • advanced nurse practitioners are undertaking screening flexible sigmoidoscopy30,31 • clinical nurse specialists in breast care are taking on the task of fine-needle aspiration,32 and including this service within previously established nurse-led outpatient clinics offering

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symptom management, prosthetics, information, and emotional support • clinical nurse specialist roles have been developed to provide one-stop clinics to perform colposcopy and provide treatment.33,34 A focus of research studies investigating these new roles is to evaluate potential cost savings and the ability of nurses to obtain accurate tissue samples for diagnosis, comparable to that of medical colleagues.30,31,35 These evaluations, although indicating positive outcomes from the implementation of such roles, may not capture other potential benefits these nurse roles could deliver. In 2000, Doyal and Cameron suggested nurses as a substitute for doctors as a solution for manpower issues.36 The previous examples illustrate that nurses are expanding their roles by undertaking tasks previously the province of medical staff. However, the evidence for nurseled care in cancer (effectiveness or acceptability) has not been thoroughly evaluated.37,38 After reviewing the current evidence, Corner concluded that to improve cancer service provision, the best results may not necessarily be gained through nurses substituting directly for doctors, but through investment in nurse-led care by providing new professional roles and new services in areas of need, and thereby wider benefits in the experience of treatment and care may be realised.37 Box 10.3 details the introduction of a nurse-led service that includes the nurse/doctor substitution of the task of skin biopsy but moves beyond this by providing a nursing assessment of patient need and access to an ‘oncology-knowledgeable’ key worker at an important phase of the treatment pathway. From 1995 the focus of directives from the Department of Health centred primarily on the organisation of cancer care provision and medically orientated treatment delivery. This agenda widened with the publication of the National Institute for Clinical Excellence (NICE) guidance, Improving Supportive and Palliative Care for Adults with Cancer in 2004.43 This document emphasised supportive, emotional, and rehabilitation care as a priority and equal to diagnostic investigations and treatment. Deficits in care were acknowledged and models offered to address care

shortfalls. Important aspects of this guidance included: • the need for a service model that recognises the central role of families/carers in providing support to patients • the separate assessment of the needs of the carer, family, and patient at key points in the pathway • recognition that care is managed across health care settings and specialties, and new models of working are needed to deliver planned, integral care for those receiving curative, palliative, or end-of-life care, from pre-diagnosis throughout the treatment pathway and beyond. To promote continuity of care, the nomination of a person to take on the role of ‘key worker’ for individual patients was the preferred model. The immediate response to the last point has been that nurses would be in the ideal situation to take on the role of key worker. Commonly the person undergoing investigations for suspected cancer receives this care as an outpatient. Access to a key worker at this stage of the treatment pathway would ideally be to an oncology outreach nurse or nurses already based in primary care. To ensure all patients have such an oncology-knowledgeable key worker, this will require changing models of care to increase cross-boundary working of acute oncology teams and/or increasing availability and access of oncology-related education and experience for nurses and health professionals based in primary care.

THE EXPERIENCE OF UNDERGOING TREATMENT Specific oncology treatments are explained and discussed in detail in the following chapters. This section will provide an overview of the experience of receiving treatment. Obtaining a cancer diagnosis, a treatment plan, and relevant information can afford some relief from anxiety. A treatment plan provides positive information that something can be done to deal with the cancer. However, the emotional

204 The experience of treatment

Box 10.3

Nurse-led service — one-stop skin biopsy clinic

By responding to patient, legislative and service need, a skin cancer nurse specialist changed the pattern of health care service delivery locally. The following are the steps and observations taken from a paper by Gill Godsell that described introducing a one-stop skin biopsy service to a cancer centre.39 Aim of the nurse biopsy role . . . to improve care delivery for the patient with suspected skin cancer by reducing the wait for a biopsy and providing continuity and a complete package of care from pre-diagnosis to treatment and discharge [p.50]. Steps 1. Develop a professional framework for practice, in line with Nursing and Midwifery Council guidance (this should include identification of need, rationale for change, proposed benefits for patients, consideration of issues of safety, nurse skill competence, education/training and validation). 2. Utilise legislation/government targets to support proposed change in service delivery and to facilitate funding if additional resources are required for role expansion. In this example Godsell cited the following documents: Making a Difference,40 The NHS Plan,41 and The Cancer Plan.42 3. Undertake skin biopsy training programme. 4. Employ an audit tool to measure efficacy of nurse biopsy role in (i) technique in obtaining adequate samples, and (ii) the impact of service on waiting times. In Godsell’s experience, diagnosis was obtained on 100% of specimens and waiting times for a skin biopsy showed a reduction from 8 to 0 weeks. 5. Regularly undertake a patient and GP satisfaction survey to evaluate acceptability of service and to gain user and service commissioner opinion. 6. Inform others of this initiative and disseminate useful guidance and protocol documents. 7. Continue to develop the role and service. Future projects: development of a national skin biopsy training course to include guidelines and competencies; production of a handbook for nurses to perform skin biopsy including the theory of dermatology surgery. Additional outcomes of introduction of this nurse-led service • The reduction in waiting time for biopsy can lead to a reduction in anxiety level for those confirmed with, or without cancer. • By reducing the biopsy workload from the doctors’ list, the time for removal of the cancer can be reduced (in Godsell’s experience from 8 weeks to 3 weeks). • Provision of a patient-centred service; more time for the nurse to establish a rapport with the patient, to answer questions, allow expression of anxiety, assess psychosocial and information needs, and in addition offer sun protection/wound care advice, and information about possible diagnoses. • At the diagnostic/staging phase the skin biopsy nurse specialist is in an ideal position to function as the patients’ ‘key worker’.

roller-coaster does not cease, and anxiety occurs waiting for treatment to commence. There are fears of what side-effects will occur, to what degree they will impact, and the likelihood of treatment success or failure. A frustration for those receiving treatment and for family members is a lack of definites. Treatment plans often change due to scheduling difficulties, overwhelming toxicity, and on occasions poor response of the cancer to

treatment. As a result estimated end dates of therapy may be put back and a life post-treatment cannot be planned for with certainty. The equipment and personnel required for treatment administration often dictate where therapy can be provided (although service user pressure can often challenge current service arrangements). Cycles of treatment can be multiple and involve more than one modality; courses

The experience of treatment 205

of treatment can be scheduled over weeks or months, and maintenance therapy can continue for years. Each cancer therapy brings with it specific side-effects. Attempting to maintain elements of normality during active treatment can help to exert some control. Where possible, patients may continue working even if this means reducing their hours. Families will often try to create routine to incorporate treatment in an attempt to make children feel secure. The cycles of attending for treatment can become a routine of normality. The risk of trying to maintain normality (and possibly a brave face) is that anxieties and queries may not be aired. As many treatments are delivered in an outpatient or ambulatory setting, opportunities for people with cancer and family members to locate someone to talk to may be limited.

Treatment side-effects The nature of external beam radiotherapy tends to result in acute side-effects becoming cumulative and occurring towards the latter portion of treatment, and for several weeks after completion. The type and severity are dependent upon the specific area of the body being treated, the size of the radiotherapy field and the number of treatPersonal account 10.3

ments. Acute side-effects from chemotherapy have the potential to occur within minutes of administration but usually begin to resolve before the next cycle of treatment is administered. The effects are dependent on the specific cytotoxic agents used and their toxicity profile, single or, more commonly, multiple drug combinations, dose, and the number and frequency of cycles within a course of treatment. Personal account 10.3 provides personal accounts of the cancer treatment phase. These accounts demonstrate the individuality of the impact of cancer treatment for the patient and the spouse/partner. A medical aim of cancer treatment is to destroy cancer cells and optimise the possibility of diseasefree survival. Fear of cancer and death is such that people with cancer are often willing to accept treatment toxicity even for a slim chance of treatment response.44 People may have to deal with alterations in body shape, image and function, some of which might be temporary or permanent such as hair loss, weight gain/loss, gynaecomastia, sexual dysfunction, infertility, skin pigmentation, surgical scarring, lymphoedema, tinnitus/hearing loss, colostomy formation. It could be argued that as such outcomes of treatment are not life threatening, less attention is given to them in comparison to maximising the

The impact of chemotherapy/radiotherapy administration1

The patient perspective 1. Ian was 27 years old when he was diagnosed with a testicular teratoma. The following extracts are taken from an interview that was undertaken after he had received the second of three cycles of inpatient chemotherapy (each inpatient episode was interspersed with an outpatient injection of chemotherapy). I started the first round of chemo, got a bit knocked around, I was a bit poorly, came out, it took me a few days to get over it, returned to normal for the best part of a week, doing normal things . . . then about a week later I picked up an infection, which obviously put me straight back into hospital again, um, I was quite poorly, in hospital for three and a half days, out on Sunday then straight back in for the second round of chemo then . . . that’s really knocked me around. I was supposed to go back in on the Monday [for treatment], and I was delayed, my results [blood counts] were too low, and I was having this problem all the time, anyway because of what I had, that bad infection, the first time, they decided they’d leave it three days so I went back in on the Thursday [to start second cycle] . . . and then on the Saturday I did nothing but throw up, all day, all day there was nothing they could do for me, I was as sick as a dog . . . at about seven o’clock in the evening, I was I just felt my stomach, I thought there was nothing more to come up, I was just retching, they managed to give me my next lot of anti-sickness stuff, and I seemed to settle down then. I got home settled down and the stomach settled down, erm, still had the ‘manicness’, I mean that was just horrendous, usual thing, you know just staring at the walls, not really knowing what to do with myself, I was quite weak actually as well so I didn’t really have much energy to do anything, everything was a real effort . . .

206 The experience of treatment . . . towards the end of the week I started getting quite rough, I mean, I wasn’t throwing up but I got, it was just my brain wouldn’t work, I was just sat here, and just stringing sentences together was so difficult, and the actual effort of actually trying to think about something to say and I really didn’t actually speak probably for the best part of two days, because I really, really did not have the energy at all, or the inclination, I just spent most of my time watching telly or sleeping to be honest . . . it’s almost like, I’m awake but I am asleep, and I know things are going on around me, but I can’t interact . . . I am just completely detached, in a world of my own, and I get quite agitated as well . . . if I am sat watching telly, and if Jane is just looking through the paper, that really irritates me, it just really, I notice every little thing around me, and I just get very irritated and I just take myself off and go and lie down. I go for my booster tomorrow, and when I get to six o’clock I will start feeling a bit rough, and I take a couple of paracetamol and I feel all right. I mean I feel rough all day Wednesday but Thursday morning I will be all right, you know, so I know the cycles now, and like now when I go for the next chemo I will feel a little bit rough on Tuesday but I will be throwing up all day Wednesday, it’s just one of those things now, but I know it’s coming now. 2. Graham was 65 years old when diagnosed with prostate cancer. He had requested a PSA test after hearing about prostate cancer screening on a radio programme. The following extracts are taken from two interviews, (one when Graham was mid-radiotherapy treatment and the other on completion of this treatment). Graham often read directly from his diary annotations during his interview. The effects of treatment that Graham describes appear less acute than in the previous case but they had an immense impact on his quality of life. Graham had commenced hormone therapy three months prior to radiotherapy. This had caused erectile dysfunction. During interview Graham acknowledged the impact of this had been devastating but he found it difficult to talk about (this topic of conversation was usually raised after the taped interview). Graham also developed gynaecomastia as a sideeffect from hormone therapy. Graham’s wife believed he was terribly embarrassed about his altered body image and he would not initiate any discussion of it during medical consultations. However during interview this issue was discussed: My breasts ache here [indicates all breast tissue] which when you lie over [in bed], oh gosh it’s uncomfortable, and it’s, I comment that I’ll need a new bra soon [laughs] but hopefully this will cease when I finish with the Casodex. It’s when you, you’re in bed and you perhaps turn over, it, you know, it just feels uncomfortable, when I pour the tea in the morning, golly it aches, it’s that sort of feeling you know . . . Graham began to experience side-effects from pelvic radiotherapy halfway into 6 weeks of daily treatments. Due to the action of radiotherapy on cells these reactions continued for several weeks post-therapy. The following excerpts illustrate issues identified by Graham who completed radiotherapy on 3 February: . . . on the 24th [January] I’ve got an upset tummy, 25th the same, 26th took two Imodium, plus one later . . . then the 30th I’d got a sore bottom, feeling very poorly and I took Fybogel, I’d asked the doctor about this and he said it’s a finely balanced thing with the Imodium, anyway I took that . . . so, then the 31st that was the same still feeling poorly, and when I look back on this [the diary] yea gods! I went through the mill! . . . on the 2nd [February] I went to church, still sore, I had a slight [rectal] bleed then, but that cleared up . . . Alteration in bowel and urinary function, seeking methods of control, and the social restrictions resulting from increased toileting was a constant feature: . . . there were times when I got on that [radiotherapy machine] table and, the worst part about it was getting and holding a full bladder, I got on the table and she [radiographer] said ‘I’ll be another 10 minutes’, and I said ‘I can’t wait’, and of course you’ve lost your [treatment] slot, then you’ve got to have some more water and they fetch you back later . . . Off-tape Graham explained that his radiotherapy-induced tiredness was compounded by lack of sleep. The radiotherapy was causing irritation to the bladder mucosa, which resulted in frequency of micturition. Some nights Graham was passing water on an hourly basis, which resulted in sleep-deprived exhaustion. A month after completing radiotherapy Graham read from his diary:

The experience of treatment 207 . . . I’m starting to feel good again, another milestone, slept right through the night without getting out to the loo, absolutely wonderful . . . On 7th and 9th [February] still diarrhoea I was suffering from, I normally go to church but this particular day I didn’t go, 10th not feeling very well drinking more fluid . . . I made an appointment to see the doctor [GP] on the 13th, still having trouble with going to the loo . . . years ago I suffered from a fissure, a tear in the anal canal, and this problem had re-occurred, so I had a word with the doctor, and he recommended Proctosedyl which is an ointment and I used that and it was absolutely wonderful, ah what a blessing that was, and I started to feel better. . . . I can go out and when I see a toilet I’ll never pass them by! but another thing I meant to tell you, when I was feeling very, very tired, I took some glucose, vitamin C powder, and just put a spoonful of that in with me drink and that gives you energy, that little bit of a boost, and that helped me overcome my tiredness quite a bit really, you still had to rest from it all when really tired but glucose has always worked well . . . I’m using it occasionally now [three months post-treatment] but I’m not dependent on it now, where the first few days you were crawling around on your hands and knees, but no, I can’t believe how much sleeping I did. The carer perspective 3. At the age of 34 years, Kevin had been diagnosed with a testicular tumour. From diagnosis Kevin had hidden his cancer diagnosis from all family and friends except his wife, best friend and his employer. The couple had four young children. Kevin’s wife (Stacy) was finding it difficult to cope financially while Kevin was not working. All of these factors intensified the impact of Kevin’s treatment experience (three cycles of inpatient chemotherapy). The following are extracts from interviews with Stacy: Stacy found it hard dealing with the extra pressure of the deceit: I thought ‘Oh my God, don’t keep putting this pressure on me’ . . . I was having to cope with going backwards and forwards from [the cancer centre], cope with the kids, I had his mum up here every day, I thought I can’t cope with this much longer . . . Stacy was continually having to lie and field questions concerning Kevin’s absence. During the first course of chemotherapy Stacy was visiting and taking food to Kevin twice a day (600 miles in one week), co-ordinating child care, and dealing with all household issues. Stacy admitted ‘I’m absolutely knackered’. Stacy wanted to be with Kevin and support him. The unknown of the first course of chemotherapy was scary for Stacy as well as Kevin. Stacy had to deal with her own fears for Kevin’s safety and described an instance: . . . you don’t know what to expect, the thing that got to me was . . . he was fine sat up talking, then they give him some tablets, they said they were anti-sickness tablets, and then 15 minutes later it’s like somebody had given him an anaesthetic, he just lay there and he was slurring . . . going home I started crying, I thought ‘What the hell are they giving him?’ . . . A major difficulty for Stacy was not being able to access ongoing information about Kevin’s treatment and progress, and ask questions. Due to school runs and child care Stacy was unable to visit the hospital when doctors were routinely available and she described feeling left out. The following quote illustrates the stress Stacy was experiencing: . . . it’s weird, you know, you’re going through it as well but you seem pushed back, it’s all at the hospital . . . and you think you never get to see a doctor, you don’t know what’s happening, he’s too ill, you know, he can’t tell you . . . ’cos I had to take her [youngest child] with me every day . . . you come home, you know you are going through it but you sort of hold back yourself and you put all your efforts into somebody else . . . it’s like you’ve got the kids to think of, got to protect the kids and, you go to the hospital, you’ve got to concentrate on him . . . and: . . . I think it’s having the kids as well, you just sort of go on, automatic, and you just get up and you know what you’ve got to do and you do it and you just sort of put yourself on the back burner, you’ve got to get up, you’ve got to get the kids done, you’ve got the meals to cook, you’ve got the washing to do . . . so everybody comes first.

208 The experience of treatment

Stacy acknowledged that the nurse specialist was available and approachable but didn’t want to bother this nurse unless there was an emergency. Stacy was concerned that the nurse would be busy with other patients and she didn’t want to interrupt this work. For the first few days after treatment Stacy became a nursemaid. Kevin’s incapacity resulted in him lying in bed or on the sofa. Tasks included encouraging Kevin to take medication, cajoling him to eat and drink, and clearing receptacles that were used to collect vomit and urine. Stacy also had to contend with Kevin’s mood swings, he had become irritable and short tempered and often snapped at Stacy and the children. Kevin recognised Stacy’s strength and the supportive/ carer role she provided, but an awareness of the depth of emotional trauma was not openly acknowledged. Stacy indicated that although the experience was really stressful, trying to maintain normality for the children was a diversion but also surreal: . . . it’s really weird the things that go through your head, ’cos, you go home [from the hospital] and everything’s normal, and I go over to the supermarket, and you go over and everything’s normal, you’re out with the kids, you are doing the shopping and you come home, it’s right, it’s time to go up the hospital, see him attached to that drip and it’s weird . . . Stacy developed panic attacks several weeks earlier and they continued during this phase. Stacy turned to her GP who offered antidepressants, to which Stacy responded ‘I’m not depressed, I’m stressed!’. Four of the five interviews undertaken with Stacy illustrated a woman cut off from emotional and practical support. Stacy had often become upset when talking of her isolation. The pressure to juggle finances, family, and Kevin’s illness were immense.

potential of life extension through trials of anticancer agents. If the philosophy of care is ‘cure at all costs’ acceptance of unnecessary toxicity or physical impairment may be an outcome. It is an important role of health professionals to help patients recognise the reality of their situation, to balance decisions concerning the level of treatmentinduced toxicity, potential permanent impairment, and potential tumour control, with an acceptable degree of quality of life.

Needs assessment and patient-/ family-focused care Receiving cancer treatment can be physically debilitating, and cause emotional difficulty, social problems and financial hardship. It is therefore worrying that a number of recent studies have identified a general lack of proactive assessment of patient and carer needs, and co-ordination of appropriate care.1,3,45–49 Bottomley suggests this is compounded by the absence of consideration of informal social support that patients have access to.48,49 This may be a result of: • inadequate manpower • lack of appropriately trained personnel

• deficient partnership arrangements between health and social care services and the voluntary sector • health professionals concentrating primarily on the immediate administering of treatment and monitoring physical side-effects. Colbourne found that where the person with cancer and their spouse/partner were introduced to chemotherapy nurse teams, clinical nurse specialists, or therapeutic radiographers, these health professionals were identified as beneficial and supportive providers and co-ordinators of care.1 However, these staff generally met patients well along the diagnostic/treatment pathway and this might be considered too late in the treatment pathway. Schou and Hewison explain that the availability of key staff during treatment is a result of the acute illness model dominating cancer care provision, with treatment delivery and institutional management of ‘the treatment calendar’ taking precedence.4 There is evidence of nursing initiatives that have been shown to enhance patient-focused care (two examples are highlighted in Table 10.1). However, for some reason this work does not seem to be impacting universally across cancer care delivery. Greater investigation is needed to identify the barriers preventing the comprehensive

The experience of treatment 209 Table 10.1 Examples of patient-focused initiatives applicable to the treatment phase Reference

Role/initiative

Main benefits/comments

Dennison and Shute (2000)45

Feasibility project and audit of a ‘concerns checklist’ to identify patient problems/issues when attending a general oncology treatment and follow-up clinic.

Faithfull (2000)50

A three-phase investigation to explore the experience of men receiving pelvic radiotherapy, and to develop, introduce and evaluate a nurse-led intervention compared with conventional care.

The checklist directed health professionals to areas of patient concern/need and increased patient referral to appropriate agencies. Patient and staff evaluation of the initiative indicated improved quality of the visit through greater communication/transfer of information and improved staff/patient relationships. An additional observation during the project resulted in the recommendation that the outpatient oncology nurse role/function needs development to maximise skill and minimise clerical/administration duties. Protocol development for nurse-led support, information and practical care. The nurse role included ‘medical’ monitoring of treatment side-effects but also a health promotion model aimed at addressing the more subjective nature of symptoms such as urinary incontinence, diarrhoea, pain and reduced libido. To encourage self-reporting, patients were prepared in advance for potential problems and provided with options for preventative and early management strategies. This nurse-led, on-treatment management resulted in: • a reduction in medication to control symptoms • increased reporting of issues (that patients originally considered a by-product of treatment which they would just have to live with) • greater patient satisfaction with care.

introduction of innovative and beneficial models of nursing care during the treatment phase. It could be argued that the needs of the carer or family members are as important as those of people with cancer themselves. In researching the impact of cancer on the family, Plant identified that caring and putting the well-being of the person with cancer first was a practical necessity but caring activities also fulfilled the carer’s need to be useful.51 Often carers ‘need to be needed’ and want to understand the experience from the person’s perspective. During the ‘merry-go-round’ of treatment, the focus is on the individual receiving treatment. Whether the person is receiving treatment with palliative or curative intent the role of the spouse/partner is considered that of carer by the patient and spouse/partner.16,52–55 Research by Northouse,54 and Schou and Hewison4 identifies that commonly the role of carer is not

acknowledged or validated by health professionals. This narrow view of the impact of cancer therapy must be rectified to reduce the stress of the treatment experience for the carers.

Role expansion of the chemotherapy nurse Intravenous administration of chemotherapy is undertaken by nurses, and over 60% of cancer patients in the UK receive chemotherapy.56 Although cancer centres and units in the UK employ nurses to administer chemotherapy, an investigation by Fitzsimmons et al. identified little evaluation of nurse-led models of chemotherapy service delivery.57 It was found that particular components of service provision, such as patient information needs and technical aspects of

210 The experience of treatment

administration, were investigated rather than evaluation of a whole nurse-led service. It could be argued that although chemotherapy is administered by a nursing workforce, in the majority of cases this is not a total nurse-led service, as prescribing chemotherapy and symptom-relieving drugs and the non-protocol-driven requesting of clinical investigations remain the province of medical staff. The focus of the research by Fitzsimmons et al. (a qualitative, interview study) was to explore user and health professional perspectives of medical consultant-led ambulatory chemotherapy service provision and the acceptability of a nurse-led service.57 The findings identified that concern was raised by health professionals and users regarding a nurse–doctor substitution model; people with cancer wanted to know that doctors were taking overall responsibility for their treatment. A proposition was a ‘mixed economy-model, with nurses working in an enhanced therapeutic role, reflecting the centrality of a multidisciplinary approach to cancer care delivery’ (p.9). This would involve treatment planning by consultant medical staff but enhanced roles of nurses in relation to physical assessment skills and prescribing chemotherapy according to local protocols. Since the publication of the study by Fitzsimmons et al., the situation in relation to nurse prescribing has moved on. In the UK, as of May 2006, qualified nurse independent prescribers are able to prescribe any licensed medicine for any medical condition within their competence. Implementation of this legislation has enabled the realisation of the ‘mixed economymodel’ in a growing number of cancer centres and units.

Post-treatment The completion of an episode of treatment can bring mixed emotions – feelings of elation that therapy is finished but also the realisation that the unknown of treatment success and the potential for recurrence will remain. Instances of individuals describing feelings of abandonment and vulnerability on completion of treatment, and also a perception of no longer being a priority within the system are documented.11,58–62 After treatment

people need to be advised that side-effects can continue to impact or new problems may manifest; however, the intensity of these effects (such as reduced physical fitness and energy levels or cognitive difficulties) and the length of time these may take to resolve (if at all) can often be underestimated. The physical impact of treatment is compounded by the need to come to terms with the feelings of uncertainty that accompany a cancer diagnosis and the difficulities of living with the psycho-emotional repercussions of the cancer experience and treatment. This is explored by Little et al., who investigated the experience of cancer survivors and highlight that people undergo an adaptive process of regaining a post-treatment life.10 This study is described in Research study 10.1. It appears that people are faced with the challenge of assimilating the cancer experience, and the physical, emotional and social effects of cancer into their post-cancer life. Achieving or attempting to accept the continuing impact of cancer appears to be an essential component of the adaptation process.

Follow-on care Care from the oncology team who have administered treatment is traditionally offered through follow-up. As a minimum this includes regular surveillance with the aim of monitoring cancer absence or detecting cancer recurrence in its early stages. Co-ordinated and timely management of clinical investigations used in cancer monitoring is as important at this point in the treatment pathway as during diagnosis and staging. There is debate and varying opinion surrounding the purpose, and benefit versus disadvantage of follow-up monitoring, including:65–68 • concern over the degree of anxiety compared with the reassurance gained • the lack of cost/benefit analysis of specific imaging investigations • the resources allocated to cancer monitoring compared to the lack of evidence of survival benefit. Follow-up is contested as recurrence is frequently detected through the person seeking

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Research study 10.1 Little M., Paul K., Jordens C.F.C. and Sayers E. (2002). Survivorship and discourses of identity. Psycho-oncology 11, 170–178.10 Aim of study To explore the post-treatment personal identity and life continuity of cancer survivors. Definition of cancer survival: living at any time after diagnosis and treatment have finished, apparently free of cancer. Design Qualitative cross-sectional design. Grounded theory approach. Sample Seven women, six men (diagnosed with colon cancer, liver cancer or lymphoma) and three lay carers. Age range: 18 to 89 years. Six months to 25 years post-treatment. Method Face-to-face unstructured interviews to explore how participants managed the post-treatment experience. Two lay carers interviewed with their spouses and one alone. Interviews lasted 50–90 minutes and were conducted by two non-medical research workers. Inter-rater reliability coding of data. Findings tested and modified through focus groups/workshops involving cancer survivors, lay and professional carers. Results A core concept: an extreme illness experience can threaten an individual’s life continuity and personal identity. Analysis of data and discussion of findings provides a model of discourses of survival. The central theme of this model relates to cancer survivors having to restore or preserve ‘personal continuity’ and a disrupted ‘future continuity’ that they had expected before diagnosis. People manage the illness and survival discontinuity by reference to stable ‘anchor points’. The anchor points are strong values and beliefs that are not affected by the turmoil of illness, e.g. gaining strength from religious belief, or maintaining identity through work. Giving meaning to the experience creates post-treatment identity, continuity, and acceptance. Those who cannot achieve a sense of continuity or meaningful future may feel alienated from themselves and their social world, uncertain and unsettled about the direction and purpose of their life. It was identified that accommodation and resolution were factors that assisted resumption of life continuity, i.e. accommodating any residual aspects of the cancer experience and incorporation of the experience into everyday life (one way to assist this was by helping others who were experiencing a cancer diagnosis). Resolution of the ‘discontinuities’ of the cancer experience occurred through establishing an identity as a ‘cancer survivor’ and using survival as a new anchor point. The survivor is confronted with assimilating the cancer experience into a post-treatment identity. It was stressed that an ‘extreme experience’ is extreme because it leaves no aspect of identity untouched and that bouncing back (if at all) from such an event takes time and effort. The paper concluded by suggesting that the survivor has as yet no defined status and can only try to fit into models of the sick or chronically ill. On completion of treatment people often closely observe their bodies for indications of treatment success or failure. The increased visibility of the internal workings of the body that clinical tests provide can encourage ‘body watching’,1 and create a dependency on regular clinical investigations that are often part of cancer follow-up care. Several studies researching the experience of cancer patients cite the theory of embodiment to explain this type of behaviour;1,19,21,63,64 embodiment refers to the experience of both being and living through a body. Lawton identified that embodiment is not an issue until the body cannot be controlled by the self as a result of serious or chronic illness.63 From the point of diagnosis an individual’s physical vulnerability is exposed and the body’s inability to control cancer cell proliferation is evident to the person. Post-treatment, regaining faith in the body is a slow process. Although a double-edged sword that creates both anxiety as tests and investigations and their results are anticipated, and reassurance once the ‘all clear’ is given, seeking evidence through clinical investigations can offer a feeling of control. Personal account 10.4 contains personal accounts of this phase of the treatment pathway.

212 The experience of treatment

Personal account 10.4

Post-treatment experiences1

1. The following excerpts are taken from an interview with Jay, a 31-year-old man who had completed three cycles of chemotherapy for a testicular tumour 3 months previously. I’ve tried to be like, work as normal but I, I just ain’t as fit as I used to be now, I try to get back into the normal routine, the heavy lifting and that, an’ it’s my body aches and that, I suffer with a bit of back pain an’, nothing on the old cancer side, the opposite side, it’s a bit funny and tender at the moment, but my feet seem to like, it’s the circulation, I don’t know if it’s because I didn’t do nothing for a long time and sort of getting back into it, I think me body’s took that much of a shock to the system and that stuff, it’s just trying to, I suppose trying to get back into your normal routine, it ain’t as easy as I thought it would be, you know ’cos I don’t feel 100%. Jay described his first CT scan post-treatment: . . . waiting, going for me scan, that was quite, I was lay on that bed like, me fingers crossed and me legs crossed, you feel the loneliest person in the world when you are in that room, cos everyone comes in, wires you up and puts that thing in your arm for the dye, and, and it’s quite cold in there like, and you lie there in your gown and you’ve got your bald head, you look like you’re on death’s door, with your white bald head, you look a right mess, you look like something out of a concentration camp, and they [staff] just look at you, you know, and they might do you a hello, and that, they all go out of that room and they’re all talking, and you’re thinking, ‘Are they all talking about me? What, have they seen something?’ You know what I mean, so, so it’s the old [cancer] paranoia like, you know, I felt like the loneliest person in the world for that scan, well weird . . . And at the first follow-up appointment waiting to hear the CT scan results: . . . when she [registrar] got the results and we sat there like, oh me heart was going at 100 mile per hour . . . and she got it [scan report] and there was this stony silence and she was reading it, and it was yep, yep, yep, it’s all right, and I went ‘Ahhhh!’, oh, I felt like really like, I could fly, it was just like . . . if they give, like there was a million pounds there. And about other appointments attended: . . . and my results, I’d go, and it was like, gone through the roof like, you know it’s, really, really, good, and I still want, now, like I’m worried about the next one now . . . you know that’s what’s doing my head in, the next scan, you know, from the high of feeling, and like ‘Yes!’, to ‘Oh no’, down, it was like, the thing is I feels good, but I think, the worry at the moment, I really am like . . . I think once I’ve got this one [scan] over, I will, and then you know if it’s still all right then I think I’ll stop worrying, and er, get on with me life.’ 2. Derek was 70 years of age when diagnosed with prostate cancer, he had completed a 6-week course of external beam radiotherapy 3 months previous to the interview from which these excerpts were taken. . . . it’s slowly getting better, it goes up and down, one week it can go the up and you’re on the way, but then the next week you can have all sorts of things happen like water trouble, bowel trouble, and that lasts a week or so, and, that sort of puts you back a little and also, takes a bit away from your confidence as well . . . you tell yourself it’s all over and of course you don’t really know, the doctor told us afterwards that it could take quite a long time . . . and the other thing is I’m waiting for a bone scan, to see if it’s gone into my bones or not, which they’re not sure about, that’s the only way to tell, but there’s such a long waiting list . . . but that’s a little bit frustrating ’cos obviously I can’t make plans years ahead anyway but at least if you knew the results of a bone scan, you’d have a better idea. . . . the backup when you’ve left the hospital for some time, isn’t as good as when you are actually attending it, I rang, I had trouble with my bowels, and I rang up and, they were sort of putting me off from seeing the doctor . . . it was reception, I couldn’t get through to the secretary, they just said ‘Well when is the next time [outpatient appointment]?’, I told them the dates and she said ‘Well are you ill?’ and I said ‘Well I’m not ill but I’m not well’ . . . this is the reason I asked you about your other patients [the other research participants], how it affected them, because I don’t know, I mean we don’t know one another, myself and your other patients, and you don’t talk to anyone so it’s hard knowing, I would have liked to have had a word with the doctor of the symptoms I was getting because I didn’t know if it was right or not, if I should be having them . . .

The experience of treatment 213

investigation of symptoms that they have identified themselves rather than as a result of formal cancer surveillance protocols.65 An exception to this is testicular cancer where detection of relapse is possible through routine follow-up investigations and where metastatic recurrence is responsive to treatment that can deliver survival benefit.65,69 The arguments against follow-up appear to be considered in relation to cancerrecurrence detection. This neglects the potential for follow-up to include rehabilitative care for residual physical effects, and opportunities to assist with psychosocial and emotional issues which may involve the patient and carer/family. Studies of alternative schedules of cancer surveillance have been undertaken. The following three randomised controlled studies compared different models of follow-up for women who were in remission after completing breast cancer treatment. 1. Grunfeld et al. compared conventional, hospital-based follow-up with follow-up in primary care with the GP.70 No differences were found in the effectiveness of the two models. Of the 26 out of 269 women who developed a recurrence during the study, nine had experienced delays of more than 28 days in the diagnosis of recurrence. These were largely due to administrative errors, in particular delays in obtaining outpatient appointments when the case was not considered to be urgent. The majority of women with signs of recurrence visited their GP in the first instance, regardless of whether they were in the hospital or primary care follow-up system. An important finding was that 36% of women refused to participate in the study, suggesting that at least onethird of women with breast cancer want the reassurance of ongoing care by a specialist. Unfortunately no information regarding satisfaction with the two models of care was collected. 2. Gulliford et al. explored the follow-up experience of women by comparing the conventional schedule of clinic visits with reduced frequency of appointments (i.e. visits only after mammography).71 The preference of participants was for reduced frequency of visits but with

open access if difficulties or symptoms were experienced. However, 118 of the 196 women recruited to the study were more than five years post-treatment with no evidence of recurrence. Findings might be different if the study were repeated with a sample of women who had just commenced follow-up. 3. Brown et al. assessed two types of follow-up for women previously treated for stage 1 breast cancer who were in remission: standard clinic follow-up and patient initiated follow-up.72 The latter group was given written information on the signs and symptoms of recurrence and instructions to contact the breast nurse specialist if problems were encountered. There were no major differences in quality of life or psychological morbidity between the two models. More women in the standard care group reported reassurance and being checked as an advantage, while more women in the patientinitiated follow-up group reported convenience as an advantage. As in the first study, participant refusal rate was high at 50%, suggesting that women with breast cancer prefer conventional follow-up appointments. Women recruited to this study were at low risk of recurrence, women diagnosed with high-risk disease may have a greater preference for standard follow-up. An interview study of attitudes to follow-up among people with colorectal cancer in the Netherlands found a high level of satisfaction with the conventional follow-up system;73 a similar level of satisfaction was found in a UK study of 252 people attending a general oncology followup clinic.74 Also, a reluctance to accept a system based on follow-up outside the hospital setting was expressed. The previous examples illustrate that there are no definitive answers or a single participant preference for a model of follow-up. However, these studies indicate that replacing a hospital-based system with a less intensive model of care will not necessarily address the ongoing need for information and support following cancer treatment. In the last decade, alternative models of follow-up have been evaluated with the aim of enhancing the experience beyond cancer surveillance

214 The experience of treatment

monitoring. Pre-appointment checklists of symptoms/issues/concerns have been used to guide health professionals to relevant areas of patient need or difficulty and increase appropriate referral to support agencies.45,46,75,76 Nurse specialists are increasing their role in managing ongoing support and follow-up, and examples are provided in the following paragraphs. Nurse-led telephone follow-up has been suggested as a potentially efficient and economical way of providing post-treatment interventions and support. Cox and Wilson conducted a literature search to draw together the evidence relating to follow-up for people with cancer delivered by nurse-led services and telephone interventions.77 This literature review suggested nurse-led follow-up met needs for psychological support and information, and the telephone was an acceptable route of providing elements of this service. Protocol-driven nurse-led clinics running parallel to consultant clinics have proved successful. They offer reduced waiting times, and increased throughput of patients, while continuity of contact is maintained that can lead to a trusting long-term relationship.78 Fitzgerald-Smith et al. highlight that an additional benefit is increased access, as patients can obtain telephone advice or book appointments directly with a nurse specialist who can see the patient outside clinic times to deal with symptoms or other issues.78 Introduction of the role of an outreach oncology nurse practitioner in rural Ireland aimed to deliver a post-treatment service sympathetic to local need.38 Evaluation of this new role identified that it provided three main functions, a posttreatment review clinic, services for other people who had cancer, and a link between the consultant oncologist, patient and local clinicians. The emphasis was on assessment, examination, support, education, and continuity of care. The local clinics were viewed by users as more convenient with the benefit of longer appointments. Satisfaction with the model of care was high. It seems apparent that one model of follow-up care will not suit the preferences of all or fit the particularities of certain populations. Box 10.4 suggests service provision that could enhance post-treatment care.

Box 10.4 Post-treatment care — suggested service improvements • Individuals need opportunities and explanation to understand implications of clinical surveillance investigations. Health professionals need to be aware of the potential reliance on clinical tests and turn it into an opportunity for reassurance and anxiety reduction. • Cohesive ‘calendar management’ of follow-up to include physical, psychosocial assessment of patient and carer/family need. • Provide patient, carer/family and generalist health professionals with access to oncology-knowledgeable key worker from diagnosis. • Reconfigure services for oncology teams/key worker to cross traditional care boundaries. • Increase availability of easily accessible/innovative oncology education opportunities for generalist health professionals. • Networked IT to assist communication transfer. • Enhance nurse roles to provide, develop and evaluate innovative models of cancer care delivery. • Offer a variety of evidence-based options (models, settings) of follow-up that cater for individual preferences and needs, i.e. a continuum from disease surveillance to more therapeutic, emotion-focused consultations.

Final comment Advances in cancer treatment have equated to increasing numbers of people living with cancer for longer. Services need to change to accommodate the needs of this group. The role of nursing in relation to cancer treatment is essential, and is not simply about being a participant in the team making decisions about treatment, and then taking responsibility for administering and monitoring the effects of treatment. Nurses are central to determining the level of care and support required for individuals, and to establishing a package of care strategies. Such supportive care is distinct from cancer treatment, and since it relates to emotional, practical and functional problems, it may be more difficult to identify the most appropriate responses required or how these may need to alter as individuals progress through the treatment pathway. The pathway through cancer treatment is difficult, and insufficient attention has been given to how to manage problems caused

The experience of treatment 215

Diagnosis and staging Shock, fear, confusion, conflicting information The peaks and troughs of the emotional roller-coaster Experience of the person with cancer and their carer/family

Cancer treatment Dealing with acute side-effects

Cancer treatment plan Relief therapy is an option versus anxiety of unknown of treatment

Post-treatment Dealing with psychosocial and physical impact

Intervention/contact with oncology-knowledgeable health professionals peaks during cancer treatment

To ensure appropriate patient/carer/family care, need assessment and intervention are required by health professionals in the areas highlighted by the vertical arrows

Figure 10.3 The experience of the treatment pathway.

by therapies or how to help people sustain them through it and beyond. Figure 10.3 illustrates the experience of the treatment pathway. The greatest involvement of oncology-knowledgeable health professionals surrounds the administration of cancer treatment. It is evident that the individual with a cancer diagnosis, and their carers/family, require assessment of their needs and supportive care earlier than at present and that this should be ongoing beyond completion of chemotherapy or radiotherapy. The role of nursing will be pivotal in developing efficient, innovative models of care to rectify the current deficit.

References 1. Colbourne L.C. (2005). Testicular and Prostate Cancer: Explaining the Treatment and Post Treatment Experience of Couples. PhD thesis, University of Southampton. 2. Petrone M.A. (2003). The Emotional Cancer Journey. Brighton: MAP Foundation. www.mapfoundation.org (accessed 27 July 2007). 3. Kelsey S.G., Owens J. and White A. (2004). The experience of radiotherapy for localized prostate cancer: The men’s perspective. European Journal of Cancer Care 13, 272–278.

4. Schou K.C. and Hewison J. (1999). Experiencing Cancer. Buckingham: Open University Press. 5. Mcilfatrick S., Sullivan K. and McKenna H. (2003). Exploring the patient’s experience of a day hospital chemotherapy service: preliminary fieldwork. European Journal of Oncology Nursing 7, 197–199. 6. Leydon G.M., Bynoe-Sutherland J. and Coleman M.P. (2003). The journey towards a cancer diagnosis: the experiences of people with cancer, their family and carers. European Journal of Cancer Care 12, 317–326. 7. Stacey J. (1997). Teratologies: A Cultural Study of Cancer. London: Routledge. 8. Jones G.Y. and Payne S. (2000). Searching for safety signals: the experience of medical surveillance amongst men with testicular teratomas. Psycho-oncology 9, 385– 394. 9. Leventhal H., Leventhal E.A. and Contrada R.J. (1998). Self-regulation, health, and behaviour: a perceptualcognitive approach. Psychology and Health 13, 717–733. 10. Little M., Paul K., Jordens C.F.C. and Sayers E. (2002). Survivorship and discourses of identity. Psycho-oncology 11, 170–178. 11. Pelusi J. (1997). The lived experience of surviving cancer. Oncology Nursing Forum 24, 1343–1353. 12. Taylor S.E. (1983). Adjustment to threatening events: a theory of cognitive adaptation. American Psychologist 38, 1161–1173.

216 The experience of treatment 13. Woolley N. (1990). Crisis theory: a paradigm of effective intervention with families of critically ill people. Journal of Advanced Nursing 15, 1402–1408. 14. Salander P., Bergenheim T. and Henriksson R. (1996). The creation of protection and hope in patients with malignant brain tumours. Social Science and Medicine 42, 985–996. 15. Taylor S.E. and Lobel M. (1989). Social comparison activity under threat: downward evaluation and upward contacts. Psychological Review 96, 569–575. 16. Gray R.E., Fitch M., Phillips C., Labrecque M. and Fergus K. (2000). To tell or not to tell: patterns of disclosure among men with prostate cancer. Psycho-oncology 9, 273–282. 17. Neal A. and Hoskin P. (1994). Clinical Oncology: A Textbook for Students. London: Edward Arnold. 18. Otto S.E. (1997). Oncology Nursing. London: Mosby. 19. Kelly D.M. (2002). In the Company of Men: Embodiment and Prostate Cancer. 2002. PhD thesis, University of London. 20. Gordon D.R. (1990). Embodying illness, embodying cancer. Culture, Medicine and Psychiatry 14, 275– 297. 21. Nettleton S. and Watson J. (1998). The Body in Everyday Life. London: Routledge. 22. Silverman D. (1987). Communication and Medical Practice: Social Relations in the Clinic. London: Sage. 23. Degner L. and Sloan J.F. (1992). Decision making during serious illness: what part do patients really want to play? Journal of Clinical Epidemiology 45, 944–950. 24. Degner L. and Russell A. (1988). Preferences for treatment and control among adults with cancer. Research in Nursing and Health 11, 367–374. 25. Beaver K., Luker K., Glynn Owens R., Leinster S.J. and Degner L. (1996). Treatment decision making in women newly diagnosed with breast cancer. Cancer Nursing 19, 8–19. 26. Henman M.J., Butow P.N., Brown R.F., Boyle F. and Tattersall M.H.N. (2002). Lay constructions of decisionmaking in cancer. Psycho-oncology 11, 295–306. 27. O’Rourke M.E. (2001). Decision making and prostate cancer treatment selection: a review. Seminars in Oncology Nursing 17, 108–117. 28. O’Rourke M.E. and Germino B.B. (1998). Prostate cancer treatment decisions: a focus group exploration. Oncology Nursing Forum 25, 97–104. 29. Calman K. and Hine D. (1995). A Policy Framework for Commissioning Cancer Services. London: Department of Health. 30. Maule W.F. (1994). Screening for colorectal cancer by nurse endoscopists. The New England Journal of Medicine 330, 183–187.

31. Schoenfeld P., Lipscomb S., Crook J. et al. (1999). Accuracy of polyp detection by gastroenterologists and nurse endoscopists during flexible sigmoidoscopy: a randomized trial. Gastroenterology 117, 312–318. 32. Garvican L., Grimsey E., Littlejohns P., Lowndes S. and Sacks N. (1998). Satisfaction with clinical nurse specialists in a breast care clinic: questionnaire survey. British Medical Journal 316, 976–977. 33. Smith T. (2000). Colposcopy. Nursing Standard 15, 47–52. 34. Jolley S. (2004). Quality in colposcopy. Nursing Standard 18, 39–44. 35. Hillier A. (2001). The advanced practice nurse in gastroenterology: identifying and comparing care interactions of nurse practitioners and clinical nurse specialists. Gastroenterology Nursing 24, 239–245. 36. Doyal L. and Cameron A. (2000). Reshaping the NHS workforce. British Medical Journal 320, 1023–1024. 37. Corner J. (2003). The role of nurse-led care in cancer management. The Lancet Oncology 4, 631–636. 38. McKenna H., McCann S., McCaughan E. and Keeney S. (2003). The role of an outreach oncology nurse practitioner: a case study evaluation. European Journal of Oncology Nursing 8, 66–77. 39. Godsell G. (2003). Introducing a nurse biopsy role in a skin cancer clinic. European Journal of Oncology Nursing 7, 50–52. 40. Department of Health. (1999). Making a Difference: The New NHS. London: HMSO. 41. Department of Health. (2000). The NHS Plan. London: HMSO. 42. Department of Health. (2000). The Cancer Plan. London: Department of Health. 43 National Institute for Clinical Excellence. (2004). (NICE) guidance, Improving Supportive and Palliative Care for Adults with Cancer. London: NICE. 44. Slevin M.L., Strubbs L. and Plant H.J. (1990). Attitudes to chemotherapy: comparing views of patients with cancer with those of doctors, nurses, and general public. British Medical Journal 300, 1458–1460. 45. Dennison S. and Shute T. (2000). Identifying patient concerns: improving the quality of patient visits to the oncology out-patient department – a pilot audit. European Journal of Oncology Nursing 4, 91–98. 46. Wright E.P., Selby P.J., Gould A. and Cull A. (2001). Detecting social problems in cancer patients. Psychooncology 10, 242–250. 47. Wright E.P., Kiely M.A., Lynch P., Cull A. and Selby P.J. (2002). Social problems in oncology. British Journal of Cancer 87, 1099–1104. 48. Bottomley A. (1995).The development of the Bottomley Cancer Social Support Scale. European Journal of Cancer Care 4, 127–132.

The experience of treatment 217 49. Bottomley A. and Jones L. (1997). Social support and the cancer patient – a need for clarity. European Journal of Cancer Care 6, 72–77. 50. Faithfull S.C. (2000). Supportive Care in Radiotherapy: Evaluating the Potential Contribution of Nursing. PhD thesis, University of London. 51. Plant H. (2001). Understanding the Experiences of Close Relatives of People with Cancer. PhD thesis, University of London. 52. Baider L., Cooper C. and Kaplan de Nour A. (1996). Cancer and the Family. London: John Wiley and Sons. 53. Lavery J.F. and Clarke V.A. (1999). Prostate cancer: patients’ and spouses’ coping and marital adjustment. Psychology Health and Medicine 4, 289–302. 54. Northouse L.L., Mood D., Templin T., Mellon S. and Gearge T. (2000). Couples’ patterns of adjustment to colon cancer. Social Science and Medicine 50, 271–284. 55. Matthews B.A. (2003). Role and gender differences in cancer-related distress: a comparison of survivor and caregiver self-reports. Oncology Nursing Forum 30, 493– 499. 56. Cancer Care in England & Wales Commission for Health Improvement and Audit Commission. (2001). National Service Framework No.1. London: Audit Commission. 57. Fitzsimmons D., Hawker S.E., Simmonds P. et al. (2005). Nurse-led models of chemotherapy care: mixed economy or nurse-doctor substitution? Journal of Advanced Nursing 50, 244–252. 58. Belec R. (1992). Quality of life: perceptions of long term survivors of bone marrow transplantation. Oncology Nursing Forum 19, 31–37. 59. Davies M. and Sque M. (2002). Living on the outside looking in: a theory of living with advanced breast cancer. International Journal of Palliative Nursing 8, 583–590. 60. Ferrell B.R., Dow K.H., Leigh S., Ly J. and Gulasekaram P. (1995). Quality of life in long term cancer survival. Oncology Nursing Forum 22, 915–922. 61. Loescher L., Clark L., Attwood S. and Lamb G. (1990). The impact of the cancer experience on long term survivors. Oncology Nursing Forum 17, 223–229. 62. McCaffrey D. (1991). Surviving cancer. Nursing Times 87, 26–30. 63. Lawton J. (2000). The Dying Process: Patients’ Experiences of Palliative Care. London: Routledge. 64. Copp G. (1999). Facing Impending Death: Experiences of Patients and their Nurses. London: NT Books.

65. Brada M. (1995). Is there a need to follow-up cancer patients? European Journal of Cancer 31A, 655–657. 66. Butow P.N., Brown R.F., Cogar S., Tattersall M.H.N. and Dunn S.M. (2002). Oncologists’ reactions to cancer patients’ verbal cues. Psycho-oncology 11, 47–58. 67. Loprinzi C. (1995). Follow-up testing for curatively treated cancer survivors: what to do? Journal of the American Medical Association 273, 1877–1878. 68. MacBride S.K. and Whyte F. (1999). Attendance at cancer follow-up clinic: does it increase anxiety or provide reassurance for men successfully treated for testicular cancer? Cancer Nursing 22, 448–455. 69. Ellis M., Hartley L. and Sikora K. (1984). Value of follow up in testicular cancer. British Medical Journal 289, 1423. 70. Grunfeld E., Mant D., Yudkin P. et al. (1996). Routine follow-up of breast cancer in primary care: randomised trial. British Medical Journal 313, 665–669. 71. Gulliford T., Opumu M., Wilson E., Hanham I. and Epstein R. (1997). Popularity of less frequent follow-up for breast cancer in randomised study: initial findings from the hotline study. British Medical Journal 1314, 177. 72. Brown L., Payne S. and Royle G. (2002). Patient initiated follow up of breast cancer. Psycho-oncology 211, 346–355. 73. Stiggelbout A.M., de Haes J., Van de Velds C. et al. (1997). Follow-up of colorectal cancer patients with quality of life and attitudes towards follow-up. British Journal of Cancer 75, 914–920. 74. Thomas S., Glynne-Jones R. and Chait I. (1997). Is it worth the wait? Survey of patient’s satisfaction with an oncology outpatient clinic. European Journal of Cancer Care 6, 50–58. 75. Velikova G., Booth L., Smith A.B. et al. (2004). Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. Journal of Clinical Oncology 22, 714– 724. 76. Rogers M. and Todd C. (2002). Information exchange in oncology outpatient clinics: source, valence and uncertainty. Psycho-oncology 43, 336–345. 77. Cox E. and Wilson E. (2003). Follow-up for people with cancer: nurse-led services and telephone interventions. Journal of Advanced Nursing 43, 51–61. 78. Fitzgerald-Smith A.M., Srivastava P. and Hershman M.J. (2003). The role of the nurse in colorectal cancer followup. Hospital Medicine 64, 344–347.

CHAPTER ELEVEN

Surgery Stephen O’Connor

Introduction Surgery has been the mainstay of cancer treatment since the Egyptian physician Imhotep, later deified as the god of healing, developed procedures for the surgical excision and cauterisation of breast tumours in 2650 bc.1 Similar interventions were used throughout the classical world, the Persian physician Asclepiades regularly performing tracheotomies on patients with an impaired airway by 100 bc, and his countryman Democedes being attributed with the first successful ‘cure’ for breast cancer when operating on the wife of the Persian King Darius.2 In later centuries the Byzantine physician Aetius of Amida was to advocate the cutting back of sufficient healthy tissue when excising tumours in 502 ad, but much of this knowledge was lost to mainland Europe after the fall of the Western Empire in 476 ad, where surgery had little basis in science or the knowledge of earlier civilisations and was carried out by monks, barbers, and poorly trained ‘surgeons’,3 until it was expressly forbidden to all ‘decent physicians’ on religious and moral grounds by the Council of Tours in 1163 ad. Notwithstanding this, surgery continued to develop and was regarded with increasing eminence in the East, the first recorded colostomy being formed by an unnamed surgeon in Shiraz (Iran) at this time, and the Moorish physician Abu Al-Zahravi (930– 1013 ad), otherwise known as Albucasis advocating that surgical excisions be ‘wide and bold’, and

include any veins running to and from the tumour, which he regarded as responsible for the spread of the disease. Ambrose Paré (1510–1590) realised the importance of lymphatic spread when operating on small breast lesions in 16th century France, and the following century found his countryman Bernard Peyrilhe developing the first radical mastectomy to include the pectoralis muscle and axillary lymph nodes in 1773.2 The Renaissance saw the rehabilitation of surgery as a legitimate province of medicine in Western Europe, Johann Schultes of Ulm carefully describing the instruments and procedures required for mastectomy in his treatise Armamentum Chirurgicum published in 1645,1 although little real progress in the management of the disease was made in the two centuries that followed, William Marsden declaring that physicians knew ‘absolutely nothing’ about it when founding his London hospital (now the Royal Marsden Hospital) for the treatment and study of cancer in 1851. By the end of that century, William Halsted (1894–5) had perfected Peyrilhe’s procedure to include the supraclavicular lymph nodes, and surgical interventions for the treatment of cancer grew apace following the first public demonstration of inhaled anaesthesia for the removal of a jaw tumour by William Morton at the Massachusetts General Hospital on 16 October 1846, a landmark event which was to be replicated in the same hospital just one day later by the surgeon George Hayward who rendered a female patient

Surgery

into a ‘state of insensibility’ prior to the removal of a large tumour on the arm using Morton’s ‘Letheon’ gas inhaler. Abdominal surgery remained a rare event until Christian Billroth, a Germanborn Professor of Surgery in Vienna, undertook the first successful partial gastrectomy for the removal of a cancerous pylorus in 1881. Billroth had already pioneered a number of procedures for head and neck cancer, including the first successful resection of an oesophagus in 1872, laryngectomy in 1873, and the first successful resection for carcinoma of the rectum in 1876, rendering gastrointestinal surgery a much safer and more commonplace phenomenon that it had hitherto been.4 Advances in surgical techniques since then have been at the leading edge of scientific enquiry,3 and have led to dramatic improvements in the management of many cancers.5,6 These include the ‘laparoscopic revolution’,7 which has improved outcomes, recovery times and morbidity associated with the treatment of prostate, colorectal, gynaecological, renal, and gastric cancers to name but a few,8–14 the minimally invasive treatment of breast, renal, and prostate cancers with cryosurgical ablation,15–21 and the use of intra-operative radiotherapy to deliver a single therapeutic dose of ionising radiation during surgery.22–26 These developments have enabled surgeons to engage in tissue-sparing surgery in those with early disease, which has better cosmetic results. An additional advantage of such developments is the reduction in hospitalisation and recovery time for such patients, Holub et al.’s (2002) multicentre comparison of laparoscopy versus open laparotomy for endometrial cancer showing a mean of 3.9 as opposed to 7.3 days to discharge.10 Other developments have included the growing use of sentinel lymph node biopsies in cancer surgery. These are based upon the realisation that the disease status of the axillary lymph nodes in breast cancer patients could be anticipated by the pathological status of the first lymph node to receive lymphatic drainage from the breast – otherwise termed the sentinel lymph node.27 This allowed surgeons to omit axillary lymph node dissection in women with disease-negative sentinel lymph nodes, and considerably reduced the inci-

219

dence of post-operative pain, lymphoedema, numbness, and restricted arm movement associated with complete axillary lymph node dissection.28,29 Sentinel lymph node lymphoscintigraphy is, furthermore, a more accurate indicator of disease spread than surgical examination alone, one study demonstrating positive lymph node involvement in 89% of cervical cancer cases whereas the intra-operative detection rate was only 70%.30 Sentinel lymph node biopsy is now used extensively in many types of cancer surgery including lung, gastrointestinal, genitourinary, oropharyngeal, and head and neck cancers in addition to breast cancer, where it may be used to give an indication of post-operative recurrence as well as determining the extent of surgery required.

Principles of surgical oncology While the use of ionising radiation and cytotoxic chemotherapy is virtually synonymous with cancer care, surgery remains the primary treatment modality for the majority of solid tumours and offers the greatest hope of cure.31 It has been estimated that surgery is responsible for complete remission of the disease in 43% of cases, as opposed to 18% for radiotherapy and only 6.5% for chemotherapy;31,32 its success rising considerably when the disease is discovered in its earlier stages, or when it is used in conjunction with radiotherapy and/or chemotherapy.5 The scope of surgery has expanded considerably in the last few decades and does not simply include definitive treatment.5 Most individuals with cancer will undergo some form of surgical procedure at some time during the disease process, whether it be a biopsy taken to assist with their diagnosis,33,34 the insertion of a central venous line for the administration of cytotoxic chemotherapy,35,36 the formation of a colostomy or jejunostomy to reduce the impact of advanced disease or its treatment,37,38 decompression laminectomy for spinal cord compression, or the insertion of an expandable metal stent for superior vena cava syndrome in an oncological emergency.39,40 Further treatment may be required in the aftermath of definitive surgery to overcome the physical or

220 The experience of treatment

psychosocial impact of treatment and improve quality of life.41 This may include reconstruction of the breast or voicebox after the radical excision of a tumour,41,42 or the insertion of prostheses or implants in children following surgery for sarcoma.43 The indications for surgery are manifold therefore, and include: • • • • •

prophylactic surgery diagnostic surgery definitive (or curative) surgery rehabilitative (or reconstructive) surgery palliative surgery.

Surgery may also elicit considerable benefit in disseminated disease so long as metastases remain isolated and resectable,31 and its role in the palliation of advanced symptoms such as bowel obstruction, spinal cord compression and superior vena cava obstruction has long been recognised.40,44,45 Meanwhile, developments in our understanding of molecular oncology, the endocrine system and cancer genetics have given rise to the notion of prophylactic or pre-neoplastic surgery,46 for certain types of breast, ovarian, and colorectal cancers as well as cryptorchidism, ulcerative colitis and multiple endocrine neoplastic syndrome.5,6 Tumour-related factors indicating whether a solid tumour is amenable to surgery include its location, histology, growth rate, invasiveness, and metastatic potential.5,6,31 Slow-growing tumours with a long cell cycle, low growth fraction and low metastatic potential are the most amenable to definitive surgical treatment, although as many as 70% of tumours will have metastasised by the time that a primary tumour is diagnosed, requiring systemic chemotherapy or locoregional treatment with radiotherapy in addition to surgery if an acceptable outcome is to be achieved.5,6 In making such decisions, it is vital that the surgeon be provided with an accurate histology, staging, and grading for the tumour since this will impact directly upon the nature and extent of the surgery undertaken. In early breast or bladder cancer, the extent of surgery required to effect a cure may be limited, a simple lumpectomy or transurethral resection of the bladder tumour being sufficient to remove the disease, whereas a more radical

approach may be required in advanced disease.31 In addition, the surgeon will need to consider the age, functional status and anticipated quality of life for the individual after surgery, and the appropriateness of adjuvant therapies that may further complicate the individual’s post-operative recovery such as impaired secondary wound healing, infection or electrolyte imbalance caused by prior exposure to ionising radiation, the concomitant use of anti-metabolite drugs, or the systemic side-effects of cytotoxic drugs more generally.31 Post-operative morbidity and mortality are also important considerations that will be borne in mind when deciding upon an appropriate choice of treatment. Prospective scoring systems such as POSSUM (the Physiologic and Operative Severity Score for the enUmeration of Mortality and morbidity),47 and the Association of Coloproctology of Great Britain and Ireland’s (ACPGBI) risk score for malignant large bowel obstruction48 are becoming more prevalent in the decision-making process.49–51 POSSUM takes into account physiological measures such as an individual’s age, Glasgow score, electrolytes, respiratory and cardiovascular status, as well as the stage of the cancer and number of operations previously performed,47 while the ACPGBI risk assessment scale uses morbidity and mortality data from 10 613 procedures conducted in 93 different hospitals together with the Duke’s staging system and the American Society of Anesthesiologists (ASA) functional status scale (see Table 11.1) to calculate the risks associated with surgery for large bowel cancer.48 However, even large datasets such as those in the ACPGBI study represent only a small proportion of the entire cancer population, and the lack of prospective randomised controlled trials and a clear evidence base for specific surgical interventions continues to frustrate the development of a more empirical approach to surgical oncology.31,52 This is particularly relevant when one considers the impact that consultant training, preference, and the frequency with which procedures are performed have upon surgical outcomes, there being a marked contrast between the performance of individual surgeons, hospitals, and even nations where surgery for many common cancers is concerned.31,53,54

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Table 11.1 Duke’s staging system and the American Society of Anesthesiologists’ status scale Duke’s staging

Criteria

A

D

Tumour confined to the innermost lining of the colon or rectum and does not extend beyond the muscularis propria Tumour has grown beyond the muscle layer and extends into the subserosa or the serosa but has not spread to the lymphatic system One or more of the regional lymph nodes is disease positive (C1) or one or more of the apical lymph nodes is disease positive (C2) Distant metastases are present beyond the original limits of surgical resection

ASA score

Criteria (with mortality risk expressed as a percentage)

I II III IV V

Normal health (0.05%) Mild systemic disease that does not inhibit activity (0.4%) Severe systemic disease that inhibits activity but is not incapacitating (4.5%) Incapacitating systemic disease which is constantly life threatening (25%) Moribund. The patient is not expected to survive more than 24 hours without surgery (50%)

B C

However, no one study can possibly control for the myriad variables faced by individual surgeons in their daily practice that could impact upon the outcomes of treatment. These include individual differences in the staging and grading of cancers at presentation, functional status, the presence or absence of co-morbidity, and differences in the disease trajectory and treatment histories experienced by individuals by the time that surgery is attempted. Similarly, international and regional variations must take account of local culture, health beliefs and socio-economic factors, since these too play an important role in the development, presentation and outcomes for certain types of cancer such as gastric, breast, colorectal, and bladder disease, which may have completely different aetiologies and presentation patterns in some settings or minority groups.5 Considerable progress has been made in the UK and other countries, since the introduction of subspecialties within surgical oncology, although the benefit of this may be offset by the need for individuals with less common cancers to travel greater distances for treatment by a site specialist.5 A small number of studies question the need for the establishment of surgical subspecialities within oncology,31,55 overall standards of training and competence assessment appearing more important in the promotion of clinical effectiveness than the frequency with which procedures are performed by any one individual.55

Prophylactic surgery Prophylactic surgery may involve the excision of non-cancerous or pre-cancerous cells or tissues in order to avoid their becoming malignant, or the surgical correction of an anatomical, developmental or genetic defect which may subsequently give rise to cancer. It may be considered for a number of conditions or ‘at-risk’ groups, including cryptorchidism or undescended testis which is associated with a 10- to 40-fold increase in the incidence of testicular cancer.5,6 About 10% of men developing testicular germ cell cancer have a history of testicular maldescent,5 and orchidopexy during infancy may reduce, although it may not entirely remove the risk of testicular cancer later in life. The incidence of testicular cancer is actually quite low within the general population, with a reported incidence of between 2 and 5.7 per 100 000 of the population in the West and lower still in those of South-East Asian and African descent,5,6 but it remains the commonest malignancy and, until recently, the commonest cause of cancer deaths in young men between the ages of 25 and 35 years, warranting the surgical correction of cryptorchidism as early in infancy as possible. Hereditary non-polyposis colorectal cancer

Hereditary non-polyposis colorectal cancer (HNPCC) is the most common form of hereditary colorectal cancer and accounts for approximately

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20% of all colorectal cancers, most families having three or more instances in their family history.6 Those affected by the syndrome have an 80% lifetime risk of developing the disease,56 which may not become apparent until the affected person is in his or her early 40s, HNPCC lacking many of the systemic manifestations of familial adenomatous polyposis coli.6 Family history is therefore the main method for identifying an individual’s susceptibility to HNPCC, followed by genetic counselling and testing. Although primarily affecting the gastrointestinal system, some women are also at increased risk of developing precocious ovarian and endometrial cancers at a young age,6 and the aggressive nature of the colorectal adenomas associated with the condition lead many to undergo a prophylactic colectomy rather than endure a lifetime of uncertainty.56 Trials are also currently being undertaken into the efficacy of cyclo-oxygenase enzyme (COX-2) inhibitors and the non-steroidal antiinflammatory drug (NSAID) sulindac for HNPCC, since these have been demonstrated to reduce the conversion of arachidonic acid into prostaglandins and reduce both the size and incidence of colorectal tumours.57–59 Sulindac carries significant risk of gastric disturbance, particularly with long-term use, and recent controversy around the clinical use of the COX-2 inhibitors make it likely that endoscopic surveillance with or without colonoscopy and ileoanal pouch formation is likely to remain the most important risk-reducing intervention for the condition. These same surgical interventions have also been used for the treatment of ulcerative colitis,60,61 which predisposes the individual to both bile duct and colorectal cancer.6 Those diagnosed at a young age,5 or with disease beyond the splenic flexure are most at risk,6 and were previously recommended surgical intervention although surveillance is now more common, as dysplastic changes to the mucosal lining of the gut tend to provide adequate warning of malignancy so that surgery can be undertaken.5 Familial adenomatous polyposis coli

Prophylactic surgery may also be performed in those diagnosed with the rare autosomal dominant condition familial adenomatous polyposis coli (FAP), which results from a mutated gene on

chromosome 5.5 Those affected by the gene mutation begin to develop multiple benign polyps from puberty and have a high lifetime risk of developing colorectal cancer if these are allowed to develop unabated. Annual colonoscopy is commonly used to screen the affected individual from the age of 19 or 20 years, and an oesophagogastric duodenoscopy may be indicated to observe for lymphoid hyperplasia, gastric, and duodenal adenomas.60,62 If polyps appear, a prophylactic colectomy with ileo-rectal anastamosis is likely to be performed.62–64 Complications associated with the establishment of an ileo-anal pouch or reservoir after colectomy may require frequent contact with members of the health care team, and provide the basis for the development of an ongoing therapeutic relationship which will vary according to the vicissitudes of the individual’s condition.60 Those living with an ileo-anal pouch face many difficulties, one study suggesting that they may live in a world of restricted opportunity, where uncertainty and the fear of malignant disease are common, the individual having to come to terms with an altered body image and cope with unpredictable periods of ill-health on a continuing basis.61 Strategies used to cope with the uncertainty of the condition and the complications of treatment include a need to maintain control, to give and receive help from others, and a heightened appreciation for life and relationships – though an individual’s capacity to achieve all of these varies according to their health status.61 Multiple endocrine neoplasia

Prophylactic surgery may also be used in the treatment of multiple endocrine neoplasia (MEN), a series of rare inherited autosomal dominant conditions that affect both sexes equally and show no racial or geographical distinction in their prevalence.65,66 Each cause the proliferation of benign, and if uncorrected, malignant tumours with advancing age.5 The first, MEN1 or Wermer’s syndrome, affects the pituitary, parathyroid and pancreatic islet cells giving rise to hyperparathyroidism, which causes kidney stones and renal problems from young adulthood onwards, and the development of gastrin-secreting gastrinomas associated with Zollinger–Ellison syndrome. Ninety per cent of gastrinomas occur in the

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pancreas, 5% in the duodenum and others in the stomach, though local spread to adjacent nodes, the liver, and distal metastases occurs in 60% of cases making pancreatectomy unsuitable.5 Medical management using histamine antagonists,5 or proton pump inhibitors is now being advocated as a first line of treatment for this condition in preference to surgery,65 which may still be required for the removal of prolactinomas, benign tumours occurring as a result of an overactive pituitary gland. These affect sex-drive or fertility in men and women respectively, but may also give rise to visual disturbance because of their proximity to the optic nerves and require surgical intervention when dopamine agonists fail to correct the condition.65 Harmless fatty lipomas may also form under the skin, which may be removed surgically for cosmetic reasons, but insulinomas and, less frequently, glucagonomas may form in the pancreas giving rise to hypoglycaemia or diabetes. These require surgical excision wherever possible since they metastasise to the liver and adjacent nodes and cause premature death in about 10% of cases.5 Gauger et al. recommend aggressive screening using endoscopic ultrasonograpy in order to elicit prompt surgical intervention in such cases.67 Adenomas of the parathyroid glands are also common in the second type of multiple endocrine neoplasia (MEN2 or Sipple’s syndrome),6 which has a penetrance rate of 70% by age 70 years.68 Although most carriers are diagnosed on the basis of their clinical signs by the age of 30 years, this figure is falling with the advent of calcitonin assays and improved understanding of the genetic nature of this condition which allows specific gene testing in the children of affected adults.5,64 MEN2 individuals have a 100% likelihood of developing medullary thyroid tumours which have a high metastatic potential via both the lymphatic and venous routes,5 and while their prognosis depends upon the stage of the disease at presentation, prophylactic thyroidectomy is advocated in children as young as 5 years if they carry the genetic mutation,64 and younger in those carrying the RET proto-oncogene because of its more aggressive nature in these individuals.68,69 Phaeochromocytomas, vascular tumours of the adrenal gland which cause excessive secretion of the catecholamines

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adrenaline and noradrenaline, leading to weight loss and hypertension, commonly occur in MEN2 individuals. These may be excised surgically, although careful clearance of the excision margins is required.5 Small to medium-sized tumours can also be removed using laparoscopic techniques,70,71 which may prove advantageous as the relatively small number of studies to date show a decrease in both the length of hospital stay and post-operative complications, making it a preferable option to open surgery although tumour-mediated irregularities in blood pressure and cardiac rhythm will require intensive medical management in the preoperative period using both α- and β-blockers.5 Hyperparathyroidism occurs less often in MEN2 than MEN1, although its incidence increases with age. Hypocalcaemia may result from too aggressive an excision, subtotal parathyroidectomy and cervical thymectomy being advocated in such cases because of the formation of supernumerary parathyroid glands,68,72 dietary supplementation of both vitamin D and calcium being required in those undergoing a complete thyroidectomy.66 Newer recommendations for treatment, emanating from the Netherlands and elsewhere, advocate prophylactic thyroidectomy and parathyroidectomy with the re-implanation of one or more parathyroid glands into the neck or non-dominant forearm for MEN2 individuals carrying the causative RET mutation.73 A small number of individuals present with mucosal neuroma syndrome, which contains features of both MEN1 and MEN2, most notably phaeochromocytoma and medullary carcinoma of the thyroid, although the most important distinguishing feature is the early development of mucosal neuromas in the lips, tongue, mouth and gut which may require definitive surgery followed by surgical reconstruction.5 Psychological and ethical considerations of prophylactic surgery

The impact of surgery on an individual depends upon a complex array of factors, including the real or perceived sense of threat they feel themselves to be under as a result of their cancer risk, personality traits, and the psychological morbidity that a strong family history of cancer engenders.74 These concerns may be unalleviated by

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medical surveillance or counselling, and lead them to seek radical surgery in the absence of actual disease.75,76 The psychological impact of mastectomy has been well documented,75,77 but women with the breast/ovarian cancer syndrome attributed to germ-line mutations in the BRCA1 and BRCA2 tumour suppressor genes may also opt for prophylactic laparoscopic oophorectomy which may lead to a loss of fertility and additional body image and sexuality problems, the impact of which has been little studied.64,78 Individuals may inherit germ-line mutations in these genes which normally repair damaged cellular DNA prior to mitosis, or the genes may themselves become damaged, rendering them less effective at preventing the replication of mutated DNA during cell division, and hence cancer. The development of predictive genetic tests for these mutations means that lifetime risk for FAP and MEN as well as many breast and ovarian cancers is increasingly diagnosed in young children or adolescents who will subsequently live with both the knowledge and consequences of their diagnosis for the rest of their lives. The psychological and emotional impact of regular invasive screening for these potentially life-threatening conditions has been little studied, but its effects should not be underestimated, thus prophylactic surgery may be offered in an attempt to limit cancer risk and the psychological impact of regular surveillance in such individuals.63,79,80 One longitudinal study of 48 children at risk from FAP found that positive children who also had an affected older sibling demonstrated significantly higher, though subclinical, increases in depressive symptoms in comparison to those who tested negative and whose siblings did not have the condition. Children found not to have the gene mutation, but who nevertheless had an affected brother or sister also had higher depression scores than those without, and one should not underestimate the significance of either result on children submitted to such tests, since relief may soon give way to feelings of guilt and remorse for their afflicted sibling.63 Altered body image, alienation, isolation from friends and peer groups, and the fear of death or medical interventions has been well documented among children and adolescents with cancer, one strategy to overcome

this being their inclusion in decision making and the negotiation of desired care outcomes,81 but decisions about the appropriateness of genetic testing and prophylactic surgery may cause friction among parents, grandparents and older siblings at a time when the child is incapable of making a legally autonomous decision on an issue that will affect them for the rest of their life. It would appear that the psychological risk of a positive test result is greater in the young and those portraying higher premorbid anxiety traits than older adults,82 but young probands (the affected individual through whom a family with a genetic disorder is first identified) may, in addition, be confronted with a loss of sexual function, changes in body image and ongoing surgical interventions which may affect self-esteem and psychosexual development for the rest of their lives.61,83,84 Furthermore, research into the impact of genetic testing for MEN suggests that a negative result does not necessarily equate with a reduction in anxiety for either the proband or their family, since mutation-positive parents frequently demand further screening on the basis that the test result may be wrong or unreliable.85 Nurses engaged in the care and support of those undergoing such tests should adopt an approach to care that elicits the concerns of the whole family therefore,63,79 since anxiety, uncertainty and an irrational fear of cancer may persist irrespective of the test result.86–88 The evidence base for prophylactic mastectomy

Individuals with breast cancer who carry a BRCA1 gene mutation have a 64% lifetime risk of developing a second primary breast cancer and a 44– 60% chance of developing primary ovarian cancer during their lifetime.64 Thus the decision to undergo prophylactic bilateral mastectomy and oophorectomy in order to reduce their lifetime risk of either disease is a reasonable one in women with a good prognosis. A number of papers suggest that bilateral prophylactic mastectomy may also reduce the lifetime cancer risk in disease-negative breast cancer gene mutation carriers,89–91 although it does not completely eradicate the possibility of it occurring.76 The authors of one study calculated on the basis of the literature reviewed, that

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prophylactic bilateral mastectomy reduces the 50–80% lifetime risk for BRCA1 and BRCA2 carriers by as much as 80–95%, and report a 74% decrease in breast cancer anxiety in such women.91 Their analysis shows that on average, 70% of respondents were satisfied with the physical outcome of their mastectomy, particularly if nipple-sparing surgery had been performed, one unanticipated finding being that a small number of women were happier with post-operative reconstruction of their breast than their pre-operative state. These conclusions are broadly consistent with the results of other studies which posit both survival and psychosocial benefits of prophylactic mastectomy in such women,89,92–95 but prophylactic mastectomy in women who do not show evidence of the disease remains controversial.64 One Cochrane systematic review has identified serious methodological limitations,76 including a lack of suitable control groups,96 follow-up times of less than 5 years,95 and the use of unvalidated patient satisfaction tools in many of these studies, while many carried out in the 1970s and 1980s included women who would not now be considered at high risk of developing breast cancer. Notwithstanding this, reported levels of satisfaction with the physical, emotional, and psychological outcomes of prophylactic bilateral mastectomy cited in recent studies using tools such as the General Health Questionnaire and the Body Image Scale is high,92,93 though many retrospective studies rely heavily upon respondent recall – often over several months – and frequently lack baseline data by which to make a comparison.76 One problem inherent in advocating prophylactic mastectomy is the inability – even amongst BRCA1 and BRCA2 gene mutation carriers – to judge with any accuracy which of them may or may not go on to develop breast cancer. The picture is even more confused in those lacking a gene mutation but, nevertheless, faced with a strong family history of the disease.76 The decision whether or not to undergo prophylactic mastectomy is rarely made lightly,97 though a heightened sense of vulnerability and the presence of psychological anxiety has been positively correlated with a decision to undergo mastectomy in the absence of breast disease.98 A substantial number of individuals may return to their general practitioner

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(GP) or the cancer genetics service with cancer anxieties in the aftermath of prophylactic surgery,64 whilst cancer-related distress, quality of life and body image problems associated with surgery may persist for many years after surgery.96 An overemphasis on individual responsibility for treatment decisions is occasionally correlated with poorer satisfaction outcomes in the aftermath of surgery, and it would seem vital, therefore, that the decision to undergo prophylactic mastectomy is not made in isolation.99 Many making the decision will have been personally affected by the death of a close friend or relative, and several studies highlight the importance of psychosocial support at such a time.92,95 Lostumbo et al. (2004) draw an important distinction between prophylactic and curative mastectomy, arguing that the former does not constitute a medical emergency and should only be made after careful explanation of both the real and relative risks has been given, and sufficient time allowed for reflection on the information provided.76 While there is strong evidence to support the value of prophylactic oophorectomy in women with pre-existing breast disease, the evidence base for contralateral prophylactic mastectomy remains contentious.64 Some studies suggest that it may decrease the risk of a second primary cancer occurring in the remaining breast,100,101 although Lostumbo et al. again point out the methodological limitations inherent in these studies, most notably, the lack of control for confounding variables such as concomitant cancer therapies.76 Moreover, a reduction in contralateral spread by such means does not necessarily equate with improved survivorship, the risk to the individual from metastatic disease being much greater than that for a second breast cancer occurring – even in BRCA gene mutation carriers.76 If, however, a decision is taken to remove the contralateral breast, this should always be preceded by sentinel lymph node biopsy in order to reduce the need for complete axillary node dissection and thus spare the individual from common problems such as lymphoedema, numbness and restricted movement in her second arm.102 It will also indicate whether adjuvant treatment with cytotoxic chemotherapy is warranted prior to the removal of the sentinel node,103 an important consideration given that up to 5%

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of prophylactically excised breasts contain occult disease which may already have metastasised by the time of surgery.104

Diagnostic surgery Major surgical procedures are becoming less common in the diagnosis of cancer, and it is becoming rarer for a cancer to be diagnosed on the basis of a laparotomy alone.5 Minimally invasive procedures such as fine needle aspiration are increasingly used in conjunction with computed tomography (CT) or magnetic resonance imaging (MRI) in order to establish the presence and extent of a tumour,31 though diagnostic laparoscopy has also helped to reduce the need for laparotomy. Open surgery may still be used where laparoscopic investigation is not possible, or is unlikely to identify the presence of disease (e.g. in a retroperitoneal mass), or a large tissue sample is required to establish the histology of a tumour.31 It may also be necessary in soft tissue sarcomas or lymphomas where an accurate grading of the disease is essential in establishing the most appropriate treatment plan.31 The collection of cancer cells for cytological and morphological diagnosis now primarily involves the use of ‘minimally invasive’ sampling techniques such as exfoliative cytology or aspiration cytology.105 In the former, a selection of cells that are normally desquamated are collected or detached from the underlying tissue by mechanical means such as a spatula or brush. A Papanicolaou or ‘pap’ smear which identifies early changes in cervical cells before they become cancerous is one example of an exfoliative cytological sample,106,107 as is bronchial or pleural lavage.108 Other examples of exfoliative diagnostic tests include lumbar puncture, the collection of voided urine or a bladder wash, thoracocentesis, and laparocentesis. The collection and inspection of spontaneously voided cells from body cavities in the latter instances may indicate the presence of neoplastic cells within the sample, but they may not give conclusive information as to the location or extent of the disease.105 Similarly, cells collected via this means may have undergone a degree of deterioration in the time since they were voided

or detached from their original site, or have been damaged in the process of collection, making it difficult for the histopathologist to examine important attributes such as the number and ratio of nuclei to cell size, shape and structure, or the cells’ chromatin content.105 Further investigations such as cervical colposcopy or cystoscopy may therefore be required in order to obtain a definitive diagnosis that also give a clear indication of the site, size and extent of tumour spread. Additional procedures such as an intravenous venogram or urogram may be used to assess the function of any vital organs that may be affected by the tumour, and provide important information about the degree of tumour infiltration. Some tests such as a sputum or bronchial lavage sample may need to be repeated in order to provide a more accurate diagnosis; thus the individual undergoing diagnostic tests to establish whether or not they have cancer may require any number of separate procedures and may become frustrated at the apparent repetition of such tests or the tardiness of medical staff in providing them with a definitive diagnosis. Careful explanation of the need for such tests and the likely time scales required for the completion of each is important therefore, and should be communicated to the individual in a sensitive and supportive manner prior to their being undertaken. Other minimally invasive techniques used in the diagnosis of cancer include biopsies, fine needle aspiration cytology, needle core biopsy, incisional biopsy, and excisional biopsy, which will now be discussed separately and are illustrated in Figure 11.1. Each have their advantages and disadvantages and may be used in different circumstances, but it is important to remember that while these are often regarded by health care professionals as minor or routine procedures, they are far from routine for the individual concerned and may elicit a great deal of anxiety notwithstanding the significance of their result once known. Health care professionals frequently regard diagnosis as the first stage in the cancer journey, but for the individual, these tests may come at the end of an indeterminate period of anxiety, somatic preoccupation and any number of distressing signs such as weight loss, haemoptysis, changes in body function, or pain.5 Discussion of the need

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Fine needle biopsy

Core needle biopsy

Incisional biopsy

Excisional biopsy

Figure 11.1 Types of biopsy. Reproduced with permission from Love S.M. (1995). Dr Love’s Breast Book. New York: Perseus Book Publishers.113

for, and likely outcomes of any diagnostic tests may provide the first point of contact with the world of clinical oncology, while others may have formed strong opinions about cancer and its treatment from the prior experience of friends or family members. Lay perceptions of cancer are also informed by portrayals of cancer and cancer ‘patients’ in the media and, increasingly, by personal research on the internet and other means,29,110–111 so it is advisable to ascertain what they feel is wrong with them and their understanding of the disease so that an appropriate level of support can be given. Open questions such as, ‘what do you feel may be wrong with you?’ or ‘what in particular is worrying you at the current time’ may help to elicit personal concerns and give one a good idea of the individual’s insight into their condition.5 Moreover, it will reassure them that their fears and anxieties matter to the team caring for them and are an appropriate matter for discussion, encouraging honest communication from the outset of their cancer journey,29 and providing important information on their coping strategies so that an appropriate explanation of the different diagnostic tests that they are about to undergo can be given.112 Fine needle aspiration biopsy

A variety of biopsies are used to diagnose cancer, each varying in the amount and type of tissue taken. The least invasive procedure is the fine needle biopsy which involves the aspiration of

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tissue cells for cytopathology. It has a number of advantages over other biopsy techniques in that it can be performed in an outpatient setting and is least likely to cause tissue damage. This is important as cancers will invariably grow along a weakened tissue plane, and fine needle biopsy limits both tissue damage and the risk of malignant cells being spread by a more cumbersome instrument.105 Great care should be taken when undertaking a biopsy that the incision site and any subsequent drains are placed appropriately, so that tumour seeding does not occur beyond the surgical field which will require additional excision of healthy tissue in the procedure that follows. Initially developed for the aspiration of palpable masses such as breast lumps and enlarged lymph glands, the advent of improved imaging and laparoscopic techniques means that samples can now be taken from almost any area of the body, including the lungs, liver, pancreas, kidneys, spleen, and bone tissue.105 A successful cytology sample obtained by such means will include a mixture of dispersed cells, cell clusters, and possibly small pieces of the tumour known as ‘microbiopsies’, which will identify not only the histopathology of the tumour, but its grade as well.105 A positive cytology report provides the rationale for surgery without additional biopsy in a growing number of cancers, including breast, thyroid, lung, renal, pancreatic, and liver cancers, although the accuracy of such tests varies depending upon the skill of the person undertaking the biopsy or fixing the specimen, and the type of tumour aspirated. It has been estimated that an experienced cytologist is able to distinguish malignant from non-malignant cells in 70–80% of biopsy samples, the most amenable to diagnosis being breast, bone, and soft tissue cancers, while non-Hodgkin’s lymphoma, non-follicular thyroid cancer, primary lung cancer, and breast disease can be successfully classified in the majority of cases from a sample obtained via such means.105 There remains the possibility for a false-negative or a false-positive test result in a small number of cases, a false positive being least likely in all except thyroid cancer,105,114–116 although the use of additional tests such as histochemistry, electron microscopy, immunohistochemistry, and chromosomal and DNA analysis significantly improve

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the accuracy of a cancer diagnosis in the majority of cases.105 Histochemistry may indicate the presence of osteosarcoma and eliminate other possible causes of bone pain, while immunohistochemistry can be used to indicate the hormone receptor status of breast cancer or differentiate between benign lymphoid hyperplasia and indolent non-Hodgkin’s lymphoma in haematological disease.105 Electron microscopy may be used to identify structural differences in cancers that do not stain successfully, or to differentiate between leiomyosarcoma, malignant peripheral nerve sheath tumour, or osteosarcoma in the presence of osteoid, collagenrich uncalcified bone matrix which may accumulate where there is inadequate osteoblast activity or insufficient mineralisation of bone tissue.105 Electron microscopy is indicated in such cases, as the clinical and radiographic appearance of bone tumours may be atypical and resemble nonmalignant conditions such as local or systemic infection (osteomyelitis) or mineral, and specifically vitamin D deficiencies (osteomalacia). The side-effects of fine needle aspiration biopsy are relatively few, but include the possibility of swelling, tenderness and slight haemorrhage where this is performed on palpable tumours, and pneumothorax in fine needle biopsies of the breast, axillary lymph nodes, lung, mediastinum, and thoracic wall.105

There is also evidence that medical staff overestimate the level of medical knowledge among the general public, or amend the amount of information that they give on the basis of subjective evaluations about the socioeconomic or educational status of their clients.29,117,118 Appropriate information given in a timely and sensitive fashion is an important means of reducing anxiety and promoting active participation in the decision-making process,118,119 and nurses play a vital role in establishing what the individual understands about the procedure and ensuring that informed consent has been obtained,118 while reinforcing the positive contribution that a negative result or the proper histology, staging, and grading of a tumour will make to the treatment of their cancer if that is what is diagnosed.120 Similarly, information on where, when and by whom the results will be communicated is important, particularly in the outpatient or short-stay setting where there may be a time-lag between the procedure and discussion of its outcome, since the intervening period may be a time of considerable anxiety.121 Nurses can also greatly assist the individual by encouraging them to bring a friend or family member to the consultation since they will provide important psychological support in the event that a positive diagnosis has to be relayed, and may be in a better position to recall or reinforce what was said in the aftermath of the consultation.

Psychological preparation and impact of biopsy The propensity of patients to experience these side-effects is mitigated by the considerable advantages that fine needle aspiration offers over other biopsy methods, but should again remind the professional that these are far from routine experiences for the majority of people seeking a differential diagnosis for the complex array of signs they may have been experiencing, and reinforce the need for full explanation of the post-operative risks so that informed consent can be obtained prior to the procedure taking place.5 This is particularly important as numerous studies have indicated the paucity of information given by medical staff – particularly in a busy outpatient setting where physical examination and the elicitation of the individual’s medical history may dominate proceedings in a time-constrained consultation.29

Other types of biopsy

A core needle (or course needle) biopsy involves the removal of a 1.0–1.2 mm core of tissue through a hollow needle under local anaesthetic. It is more invasive than a fine needle aspiration, but provides a larger specimen for histopathological investigation and is adequate for the diagnosis of most types of tumour.33 Unfortunately, with the exception of a frozen section, the results of a core needle biopsy take longer to report upon, as the sample requires fixing and mounting in wax which takes several days,6 while multiple sampling may not be feasible because of its greater invasiveness.105 It does allow better evaluation of the tissue pattern however, as a greater quantity of both malignant and nonmalignant cells will be present in the sample, giving a lower number of false-negative results, but the tissue samples may be less amenable to

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ancillary diagnostic tests once fixed.105 As with all biopsies, the quality of the sample does depend upon the skill of the individual taking it, and there is the possibility, especially with a movable lump or focal disease, that the physician may miss the tumour completely, which limits the usefulness of the procedure. For this reason, only a positive result is regarded as clinically significant since a negative biopsy does not necessarily indicate the absence of disease,5 which may require an incisional or ‘punch’ biopsy to obtain a useful tissue sample.6 Incisional biopsy requires the removal of an elliptical tissue sample from a larger tissue mass, using a scalpel or punch biopsy instrument. It is the preferred method for diagnosing soft tissue and bone tumours, but great care should be taken to ensure that the needle track or incision sites are appropriately placed to avoid the possibility of tumour seeding and the need to excise more tissue than necessary during the subsequent surgical procedure.31 Excisional biopsy involves the removal of an easily accessible tumour in its totality, together with a healthy tissue margin, and may be curative for benign tumours and non-melanoma skin cancers such as basal cell carcinomas when the microscopic margins are clear.6 It is also indicated for melanoma of the skin providing that it is anatomically, functionally, and cosmetically acceptable,122 and preferable to other forms of biopsy given the propensity of the disease to spread both locally and systemically. In this case excisional biopsy allows accurate calculation of the tumour depth (Breslow thickness) and its invasiveness, which provides important prognostic information for the surgeon,122 and determines the clearance margin required; several large-scale studies demonstrating that a 1 cm margin is adequate for tumours less than 2 mm deep, and a 2 cm margin for those greater than 2 mm deep.122 Prophylactic lymph node dissection, once routinely undertaken as part of the excisional biopsy, is no longer considered appropriate since systemic spread is already likely to have occurred in tumours greater than 2 mm deep,123 five-year survival rates ranging from 25% to 40% in those requiring full regional lymph node dissection at the point of diagnosis.122 Notwithstanding developments in the above methods, it may on occasions be necessary to

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perform an examination under anaesthetic, or an open laparotomy, to establish the nature and extent of the tumour although their use is diminishing. Laparotomy may be undertaken in ovarian cancer where laparoscopic examination under anaesthetic or peritoneal washings have failed to identify residual disease, in a process known as a ‘second look laparotomy’, although its effectiveness is debatable, Souhami and Tobias (2005) suggesting that its benefit for anything other than staging purposes remains uncertain.5 A number of recent studies have reported beneficial outcomes following second-look laparotomy for ovarian cancer, where this was used to stage patients for salvage whole abdominal radiotherapy,124 and in primary peritoneal mesothelioma,125 where patients with residual disease were treated with cytotoxic chemotherapy following laparotomy and omentectomy, but such cases remain rare, and in the latter case experimental; patients derive significant palliative benefit from cytotoxic chemotherapy, particularly the newer antifolate agents pemetrexed and raltitrexed in such circumstances.5,126–129 Similarly, laparotomy and splenectomy, once common in the staging and treatment of Hodgkin’s disease have now been replaced by percutaneous biopsies including marrow trephine, which may indicate the need for chemotherapy – though the disease foci may be missed in a percutaneous liver biopsy and consequently provide a false-negative result.5 Nurse-led endoscopy services

Endoscopy is increasingly used in the diagnosis of a great many cancers and has dramatically reduced both the hospitalisation time and costs previously associated with laparotomy (see Research study 11.1).130 Its effectiveness in reducing the pain, infection, and post-operative complications associated with open surgery has been well documented and many types of endoscopic investigation now take place on a regular basis.131 These include laryngoscopy, bronchoscopy, colonoscopy, and gastroscopy to name but a few, and a brief discussion of their benefits is of direct relevance to the small but growing number of nurses undertaking laparoscopy as part of their regular employment.132,133 Early anxiety about nurses and other non-medical staff undertaking diagnostic

230 The experience of treatment

endoscopies seems still to exist,132,134,135 one study demonstrating that GPs were more likely to request follow-up barium enemas from a nurse-led than a physician-led endoscopy service.136 However, there was little difference in the total number of cancers detected or the number of false-positive and falsenegative diagnoses detected by nurse-led and physician-led services; suitably qualified nurses appear as capable of detecting malignant disease as medically trained practitioners, and provide a more cost-effective service, particularly for screening services where the unit cost of a nurse-led service for each cancer detected will be considerably lower than for a medically led service.137 Nurse-endoscopists are now leading services for FAP and a variety of other ‘at-risk’ groups,138 including capsule endoscopy for bleeding disorders,139 and an increasing number of hospitals in the UK are training nurses in the competencies required to undertake flexible sigmoidoscopy and oesophago-gastroduodenoscopy as part of the government’s drive to improve the detection rates for cancer as part of The NHS Cancer Plan.140 Colorectal cancer in particular remains a significant cause of cancer-related morbidity and mortality in the UK, but has been resistant to early detection and, consequently, curative surgical treatment.5,133,141 Nurse endoscopists were found to provide a valuable service in one national survey of hospitals employing nurse-endoscopists,141 with the benefits including cost, patient acceptability, and improved care. Nurses are now involved in sedated and unsedated techniques including flexible sigmoidoscopy, colonoscopy, and oesophagogastroduodenoscopy in addition to capsule endoscopy,132,141 but there is to date, very little literature on the additional contribution that nurse-endoscopists make to the care of individuals undergoing such anxiety-inducing procedures; one study suggests that there was little difference between nurses’ and medical endoscopists’ ability to accurately assess the comfort of those undergoing gastroscopy, both rating their comfort higher than did the individuals themselves. There can be no doubt that the number of unsedated procedures undertaken will continue to rise, but it is salutary to note that while these are generally safe and well tolerated, a significant number of individuals find them uncomfortable and distress-

ing. Interpersonal communication skills are paramount in this setting therefore,29 and pre-operative education may be of some benefit in both preparing the individual and reducing the need for a repeat procedure.130 The preparation of nurseendoscopists should therefore include the acquisition of advanced assessment and communication skills in addition to the competencies required to undertake an endoscopy, if patient satisfaction with such services is to be maintained.133

Definitive (or curative) surgery Factors indicating the use of definitive surgery include the histology of the tumour, its growth rate, location, invasiveness, and capacity to metastasise. The presence of metastases may indicate the need for systemic or locoregional therapy, although surgery may be used for symptom control or cosmetic purposes in such instances.6 The surgical team will also want to consider the performance status of individuals about to undergo surgery (see below), but the primary course of action for the majority of solid tumours is the removal of visible, palpable masses which remain limited to the tissue of origin.142 The goal of treatment in such circumstances is complete resection of the tumour together with a margin of healthy tissue, and resection of regional lymphatic drainage to prevent local recurrence. Thus radical bowel excision with end-to-end anastamosis and removal of lymphatic drainage remains the only curative treatment modality for colorectal cancer, but this may also involve removal of the mesorectum or the formation of a temporary colostomy which will be reversed at a later date.5,6 Similarly, a radical or modified radical (Patey) mastectomy facilitates clearance of a large primary breast tumour but may also require breast reconstruction using a Becker’s prosthesis, gluteal, latissimus dorsi, or a pedicled transverse rectus abdominis myocutaneous (TRAM) flap in which the rectus muscle is separated in the lower abdomen and tunnelled under the skin to form a breast mound at the mastectomy site (see Figure 11.2),142 extending the original extent of definitive surgery and potentially requiring further procedures at a later date.

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Research study 11.1 Abuksis G., Mor M., Segal N. et al. (2001). A patient education program is cost-effective for preventing failure of endoscopic procedures in a gastroenterology department. American Journal of Gastroeneterology 96,1786–1790.130 Aim of study This was a prospective, randomised, controlled study to determine the cost-effectiveness of a patient education programme in 142 adults referred for an endoscopic procedure. Method Ninety-one patients (64%) participated in a targeted educational programme conducted by a nurse specially trained to discuss the indications, choice, possible side-effects, and complications of endoscopic procedures on an individual basis. This was followed up with specific written information on the procedure to be undertaken and advice on colonic preparation together with an invitation to call the nurse with any last-minute questions prior to admission. All patients completed a questionnaire covering background data, endoscopy-related variables, anxiety level, and satisfaction before endoscopy. Results The mean interval between the educational interaction and endoscopy was 22.9 days (range 1–90 days) and there were no significant differences between patients in the intervention group (91 patients) and those in the control arms, consisting of 38 persons (27%) receiving leaflets but no instruction and 13 (9%) who were given telephone instructions and an information leaflet. No significant relationship was found between the intervention and control groups in relation to anxiety, which was reported to be quite low in this study, although the benefits of the educational programme were negatively correlated in those undergoing a repeat procedure. Satisfaction with the procedure booklets was high in all groups, but there was a statistically significant relationship between attendance on the educational programme and the success of the procedure undertaken (95.6% versus 73.6% and 62.3% respectively) when clinical causes for failure were taken into account. Failures in the pre-procedural education group were positively correlated with an increase in time between the intervention and the endoscopy. Conclusions Previous research indicating that patient adherence and the success of endoscopic procedures increases with patient education was supported by the study; those not attending the teaching sessions showed a six-fold increase in the number of procedural failures. Calculations based upon nursing costs alone showed a 5.5–8.8% reduction in the cost of endoscopy in the intervention group – the greatest saving being for colonoscopies. This supports many other studies that demonstrate the value of educational preparation on patient satisfaction, co-operation, anxiety, and the success of endoscopic procedures, but adds a new and increasingly important consideration to the equation – that of cost-effectiveness. The study clearly demonstrated the benefits accrued from pre-procedural education and posits an important role for nurses engaged in the care of patients undergoing investigative procedures of this type. Limitations The study comprises a good number of participants but the uneven distribution of patients between the intervention groups is a limitation of the study. It is interesting to note that patients who called the service for advice were automatically transferred to group 3 and that these had the lowest success rate for their investigation. The reasons why they telephoned were not fully reported but may have had a bearing upon their performance on the day of the procedure.

Definitive surgery in lung cancer

Lobectomy or pneumonectomy are the most effective treatments for non-small-cell lung cancer and offer the best chance of cure for individuals although surgery will only be suitable in about 25–30% of individuals,5 and the cure rate for

node-positive stage IIA non-small-cell lung cancer is low, with only 7–16% of individuals surviving to their fifth year.144 Surgery following induction with neoadjuvant radiotherapy and/or cytotoxic chemotherapy offers moderate survival benefit and slightly reduces recurrence,144,145 as does the use of

232 The experience of treatment Pectoralis major muscle Implant (in the submuscular compartment)

Port (placed subcutaneously in the midaxillary line) Silicone tubing (a)

(b)

Reconstruction by expansion using a Becker’s prosthesis. Flap (TRAM)

Random portion

4

Superior epigastric pedicle Synthetic mesh within the rectus sheath Inferior deep epigastric artery and vein ligated and divided (c) Latissimus dorsi flap reconstruction.The myocutaneous flap is delivered through the mastectomy wound.

Lateral view after moulding Arterialised portion

Umbilicus

(d) Conventional (pedicled) TRAM reconstruction.

Figure 11.2 Types of breast reconstruction surgery. Reproduced with permission from Baum M., Saunders C. and Meredith S. (1995). Breast Cancer: A Guide for Every Woman. Oxford: Oxford University Press, p. 70.143

specialist thoracic surgical teams,146 although the outcomes of lung cancer resection tend to be worse in the UK than elsewhere in the developed world.147 The comparative benefits of lobectomy versus limited resection for individuals with stage I–II non-small-cell lung cancer and those with resect-

able stage IIIA disease have been the subject of a recent Cochrane systematic review, which found that lobectomy with mediastinal lymph node dissection provided a modest survival advantage over tumour resection and lymph node sampling alone,148 though the limited size and number of

Surgery

clinical trials available for review limits the strength of the conclusions that can be drawn from data in these studies as do their methodological limitations. It has been argued that extensive surgery that removes more tissue than is absolutely necessary is of little value, one aim of surgery being to retain healthy lung tissue so as to maximise pulmonary function,149 thus pneumonectomy may be avoided in individuals with tumours in the descending bronchial tree by performing a sleeve resection or segmentectomy in those with limited pulmonary reserve.147,149 It is clear that even in early disease, limited resection increases the likelihood of recurrence and potentially reduces the individual’s survival chances in comparison to lobectomy or (less commonly) pneumonectomy, further underlining the argument that if non-small-cell lung cancer is to be resected at all, it should be as complete a resection as possible.108 One factor limiting comparative analysis of different studies has been the lack of a clear and unambiguous definition of what is meant by ‘complete resection’, different interpretations being used in different settings and between different studies making accurate comparison of survival advantage between different techniques difficult. The International Association for the Study of Lung Cancer Staging Committee (IASLC) has therefore suggested new criteria for the definition of complete, incomplete, and unsuccessful resections in an attempt to facilitate international comparisons and provide predictive prognostic indicators for surgical resection.108 These may be seen in Table 11.2.

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Pneumonectomy is normally indicated for tumours in the main stem of the bronchus or when more than one lobe is affected,5 although the post-operative mortality rate for pneumonectomy is approximately twice that for lobectomy, variously reported as 5–10% as opposed to 2– 5%.5,6 There is a lack of clear criteria for the surgical management of advanced disease, the outcomes of surgery alone in node-positive individuals being quite poor and demonstrating little difference in survival than for those being treated with radiotherapy and/or cytotoxic chemotherapy.150 Given the morbidity and mortality associated with surgery and the high metastatic potential of the disease, locoregional radiotherapy with or without systemic cytotoxic chemotherapy is now the treatment of choice for stage IIIa non-small-cell lung cancer,151 although the majority of individuals with superior sulcus involvement in one study enjoyed disease-free survival in excess of 18 months with a combination of pre-operative radiotherapy, surgery, and intra-operative radiotherapy,152 making surgery a viable option for individuals presenting with this condition.5,153 There is no proven role for surgery in the management of small-cell lung cancer, and the 20–30% mortality rate associated with pleuropneumonectomy (excision of the lung, pleura, hemidiaphragm, and the ipsilateral pericardium) for mesothelioma favours the use of less radical surgery (pleurectomy) in the small percentage of individuals with resectable disease, often in combination with radiotherapy.154,155

Table 11.2 International Association for the Study of Lung Cancer (IASLC) Staging Committee’s definition of complete, incomplete and unsuccessful resection for non-small-cell lung cancer (after Rami-Porta et al. (2005))108 Level of resection

Criteria

Complete resection

No extracapsular nodal extension of the tumour seen Complete systematic nodal dissection or lobe-specific nodal dissection undertaken Highest mediastinal node removed must be disease negative Microscopically proven disease-free resection margins Extracapsular nodal disease remains Disease-positive lymph nodes left in situ Resection margin contains evidence of disease Disease-positive pleural or pericardial effusions present No residual tumour left and resection margins disease free but one or more of the additional criteria above are not met

Incomplete resection

Unsuccessful resection

234 The experience of treatment

Pre-existing co-morbidity is a significant problem in lung cancer and may impact upon the individual’s ability to undergo or gain significant survival advantaged from lung surgery.156 Smoking remains without doubt the primary cause of both lung cancer and a number of common comorbidities associated with it such as ischaemic heart disease, hypertension, and carotid stenosis,157 which pose additional health problems for many undergoing surgery.149 Assessment of cardiac function and exercise tolerance will therefore be undertaken in addition to lung function tests prior to the procedure, and the need to improve cardiac function, treat hypertension, or resolve pre-existing cardiac arrhythmias with drug therapy may cause a delay in definitive surgery while the individual’s functional status is optimised preoperatively.149 Post-operative morbidity includes the risk of thrombus formation, respiratory infection, and cardiac dysrhythmias such as atrial fibrillation, particularly in older individuals,149 but relatively little is known about the experience or quality of life of those surviving beyond this period,156,158 one seminal study being reported in more detail in Research study 11.2. Reported 30day post-operative mortality for pneumonectomy is in the region of 7%, approximately twice that for lobectomy, although this may be an underestimate, many deaths being ascribed to pneumonia or multi-organ failure rather than lung injury or adult respiratory distress syndrome which can be directly attributable to surgery.149 Handy et al. (2002) suggest that as many as 12% may die in the first 6 months after surgery though few surgical studies follow individuals up for this length of time.156 Of more importance is the apparent dissonance between surgeons’ expectations of ‘cure’ and the long-term or ‘fixed functional outcomes’ of lung surgery which may be debilitating for the individual and members of their family.159 These include pain caused by disturbance of the intercostal nerves at the time of surgery, which may take 6–18 months to resolve,160 dyspnoea and fatigue which interfere with activities of daily living such as walking, personal cleansing and dressing, work, and the expression of sexuality.156,161,162 Cachexia is another distressing symptom which may not be alleviated by surgery,163

while symptom distress may be compounded by psychosocial issues such as anxiety, role change, a shrinking of the individual’s social world, and depression.164 One large-scale (n = 4496) study looking at the psychological distress caused by different cancers found that lung cancer elicited ongoing symptom distress in 43.4% of individuals, the largest proportion of any site-specific cancer and considerably higher than the overall prevalence of 35.1%.165 Oxygen dependence is another ‘fixed functional outcome’ which may have both a psychological and physiological cause post-pneumonectomy, although its incidence is lower in those receiving parenchymal sparing surgery such as lobectomy or segmentectomy.156,166 Some have argued that reports about the poor quality of life experienced by those receiving lung surgery should be balanced against poor preoperative functioning and the low rates of cure obtained with other treatment modalities such as radiotherapy and cytotoxic chemotherapy for unresectable disease, which are not themselves without risk.160 Additional psychological issues such as guilt or self-blame may also have a deleterious impact on perceived quality of life and mental health, smoking being the most common cause of most lung cancers,157 although as many as 50% may have stopped smoking by the time of diagnosis.158 The provision of smoking-cessation advice may appear belated to some and may worsen guilt or anxiety in others, but considerable benefit may accrue from smoking cessation following surgery; long-term complications such as infection, cough, wheeze and dyspnoea are less common in exsmokers than in those continuing to smoke.161 Non-smokers and ex-smokers also demonstrate lower levels of anxiety and depression after surgery although the reasons for this are unclear.161 This may be related to ex-smokers perceiving themselves to have a higher locus of control over the treatment process,167 though it should be remembered that smoking is a deeply embedded behaviour with both physiological and psychological antecedents,167,168 with some individuals continuing to smoke even after lung surgery. Smoking may form an important coping mechanism for many, and has strong links with ruminative coping styles,169,170 thus it may be difficult to break such

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Research study 11.2 Sarna L., Evangelista L., Taskin D. et al. (2004). Impact of respiratory symptoms and pulmonary function on quality of life of long-term survivors of non-small cell lung cancer. Chest 125, 439–445.158 Aim of study This cross-sectional survey sought to describe the long-term symptom experience of non-small-cell cancer patients in relation to their respiratory symptoms, pulmonary function and quality of life. Method Symptom distress, respiratory function and quality of life were assessed in 142 individuals between 5 and 22 years after treatment for non-small-cell lung cancer using repeated physiological measures such as the forced expiratory volume (FEV), forced expiratory vital capacity (FVC), and forced expiratory flow (FEF). The American Thoracic Society questionnaire and the Short-form Quality of Life Questionnaire (QOL SF-36) were also administered. The average age of respondents was 71 years and the majority (74%) had received lobectomy. Fifty-four per cent of the sample were women. Results Analysis included frequency of self-reported respiratory symptoms such as cough, phlegm, wheezing, and breathlessness and repeated objective measures of lung function such as FEV, FVC, and FEF. The study demonstrated that 66% had at least one respiratory symptom, 26% had two, 10% had three, and 5% had four or more symptoms which impacted upon their quality of life and functional status. Breathlessness was the commonest symptom (39%) followed by wheezing (31%), phlegm (28%), and cough (25%). Eleven per cent of respondents were too breathless to leave the house and 21% reported that they had spent most of the day in bed in the 12 months preceding the study because of their respiratory symptoms, though co-morbidities such as unstable angina appeared more important than the extent of cancer surgery in determining the severity of this problem. Symptom burden, rather than ventilatory impairment, appeared to contribute most to a diminished quality of life in these and the remainder of the sample, although 36% had a moderate-to-severe obstructive and/or restrictive ventilatory disorder on spirometry. Survivors exposed to second-hand smoke (28%) were more than three times as likely to report respiratory symptoms as those living in a smoke-free environment. Conclusions Spirometry successfully predicted the presence of respiratory impairment although the severity of respiratory function measured by such means did not correlate with any of the QOL dimensions tested or the subjective reporting of symptom severity by respondents. Survivors’ perceptions of symptom severity provided a more important indicator of physical, role, social, and psychological functioning as well as their general health and vitality, although symptom severity was greater in the presence of second-hand smoke, indicating an important health-promotion role for nurses working with long-term lung cancer survivors and their carers. The authors concluded that further studies are needed to fully understand the nature and extent of symptom distress in long-term non-small-cell lung cancer survivors so that effective management strategies can be designed to combat these and the accumulated effects of other co-morbid conditions. Limitations Few studies have considered the long-term symptom experience of lung cancer patients beyond a relatively short postoperative period but the elective nature of this study may have prevented those with more serious impairments from participating in the study. Furthermore, the disease-free status of respondents was not independently verified and disease recurrence may have been a confounding variable in some cases. Notwithstanding this, the study identifies the need for further research into the impact of total symptom burden on diminished quality of life, and a better understanding of the effect that co-morbidity has on breathlessness, which remains the most troubling symptom in this client group and correlates most closely with self-reported quality of life.

236 The experience of treatment

an embedded habit, especially in those with a history of depressive symptoms,169,170 and nurses should attempt to understand the seemingly inexplicable reasons why an individual might continue to smoke in the aftermath of lung surgery, offering advice and support to the individual in respect of smoking cessation without increasing the burden of guilt or self-blame that may already exist in this highly stigmatised client group. Definitive surgery for gastric cancer

As with lung cancer, surgery remains the only treatment for gastric cancer that holds out a reasonable hope of cure,171 several Japanese and South Korean studies showing excellent cure rates in those diagnosed with early carcinomas as a result of greater awareness of the disease and national screening programmes.172–175 In comparison, up to 80% of those diagnosed in the UK have unresectable disease,5,6 many presenting with large intra-abdominal masses, disease-positive lymph nodes, malignant ascites, or liver metastases as a result of late presentation. The incidence of stomach cancer in the UK and US has declined considerably in the last 50 years although it remains the second most common cancer in the world,5 but in spite of this it remains a significant cause of cancer-related mortality in the UK, the presence of 15 or more positive lymph nodes or a disease-positive peritoneal cytology being important indicators of increased recurrence and early mortality after curative surgery.171,176 It has been estimated that up to 67% of those treated with surgery alone fail to achieve long-term survivorship or improvements in their quality of life,177 although this rate is improved significantly when surgery for resectable disease is aligned with other modalities such as radiotherapy and chemotherapy.178 The surgical management of gastric cancer involves either a total or partial gastrectomy, the extent of the procedure depending upon the size, location and local spread of the tumour.5 Preoperative staging involves physical examination, chest X-ray, a CT scan and ultrasound of the liver to determine hepatic spread, and endoscopic ultrasound of the gastric wall to determine the extent of tumour infiltration and local damage.179 A laparoscopy is a more reliable means of staging

the tumour than CT scanning and will show peritoneal disease and liver metastases which may remain unrecognised on a CT scan, thus preventing many with unresectable disease from undergoing an unnecessary laparotomy.179 The 5-year survival rate for individuals with unresectable disease is extremely low at just 5%, although the 11–12% 5-year survival rate for those treated with curative intent in the UK is only half the European average and far short of the 90% 5-year survival rates reported in Japanese studies, where the diagnosis of early resectable tumours as a result of screening dramatically improves treatment outcomes.5 Total gastrectomy involves the complete removal of the stomach and greater omentum, and may also involve the removal of the lower oesophagus or spleen, depending upon the location of the tumour.5 A partial or subtotal gastrectomy may also involve resection of part of the omentum, and possibly part of the oesophagus or duodenum depending upon the tumour’s location.5,180,181 Total gastrectomy is a long and complicated procedure requiring anastomosis of the oesophagus with the jejunum, or oesophagojejunostomy. Leakage from the site of the anastomosis is common, occurring in 5–20% of those undergoing surgery, while malabsorption, diarrhoea, weight loss, and indigestion increase the postsurgical morbidity associated with the procedure.179 Loss of the stomach may lead to feelings of satiety after a relatively small meal and some individuals may also suffer from a chronic iron deficiency and macrocytic anaemia caused by vitamin B12 deficiency.5 ‘Dumping syndrome’ is a particularly unpleasant experience for individuals following total gastrectomy and is caused by the arrival of carbohydrates (particularly refined sugars) that have not previously been broken down by gastric acid or proteases in the stomach, into the proximal section of the small bowel.182 The sudden and irregular arrival of large volumes of hyperosmolar sugars into the small bowel after a meal draws fluid from the intravascular compartments and gives rise to bloating, cramping and diarrhoea within an hour of eating.179,182 The ensuing hypovolaemia leads to tachycardia, lightheadedness, and palpitations which may last for 15 minutes or more, whilst the too-rapid absorption of glucose

Surgery

may lead to an increase in insulin production and precipitate reactive hypoglyaemia 1–3 hours after the meal in a ‘late dumping’ syndrome.182,183 Hypoglycaemia associated with ‘late dumping’ leads to decreased concentration, shakiness, perspiration, acute hunger and potentially coma unless it is recognised immediately. Attempts at the pharmacological management of reactive hypoglycaemia using the somatostatin analogue octreotide to reduce gut motility and acarbose to inhibit carbohydrate digestion and reduce plasma glucose levels after eating, have proved successful,184 but many individuals find the post-prandial effects of dumping syndrome distressing and may be deterred from maintaining an adequate nutritional intake.185 One small study into gastrectomy patients’ experiences of eating and drinking after surgery found that individuals struggled to maintain an adequate oral intake and found it difficult to adapt to dietary changes made necessary by their surgery,186 thus the role of nurses in providing information and referring individuals for further nutritional advice is paramount if the neccesary adjustments to diet and lifestyle are to succeed and the impact of surgery is to be minimised. The individual should be advised that the effects of dumping syndrome will normally recede with time, but that they should try to eat several small, energy-dense meals a day and avoid taking fluids (including soup) within half an hour of eating, as this will potentiate the too-rapid passage of food in the jejunum and excacerbate bloating or satiety. Carbohydrate intake should be restricted and refined sugars avoided completely, complex carbohydrates or starches (such as wholemeal bread, pasta, and cereals) being preferable in small portions as these release glucose more slowly than their processed counterparts. Milk and milk products will also need to be restricted,183 and the individual should try to increase their fat and protein intake in order to compensate for a reduction in carbohydrates, one study demonstrating that individuals undergoing gastrectomy are particularly susceptible to a loss of body protein mass.187 Relief of the shortterm symptoms may be achieved by advising the individual to eat in a semi-recumbent position or to lie down after a meal in order to slow down the transit of food in the small bowel.

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The morbidity and mortality associated with radical surgery in advanced disease have been a source of grave concern, with many individuals struggling to maintain an adequate nutritional intake and suffering nutritional deficiencies – particularly of iron and vitamin B12 – which causes post-operative complications such as impaired wound healing and immune function.187,188 These long-term effects are often made worse by traditional approaches to gastric surgery in which the individual may remain ‘nil by mouth’ for anything between 8 and 12 days so that the anastamosis can heal sufficiently. In such circumstances, post-operative feeding via a percutaneous jejunostomy tube will minimise weight loss and promote a swifter post-operative recovery allowing continuous feeding to take place in a pattern which is more redolent of normal digestion as the fundal sphincter normally releases small amounts of liquified chyme into the small bowel on a nearcontinuous basis after eating. A number of studies have also looked at jejunal pouch formation as a means of creating additional gastric reservoir function thus slowing down the entry of foodstuffs to the small bowel,189,190 though Bonenkamp et al. (2002) question the value of such pouches in improving nutritional status,179 and Scholmerich (2004) advocates nutritional rather than surgical approaches for the problem of malabsorption and dietary deficits.185 The formation of jejunal pouches normally requires the retention of at least part of the stomach, making them less feasible for those receiving total gastrectomy although a Roux-en-Y oesophagojejunostomy (a procedure allowing removal of the stomach and anastomosis of the lower oesophagus with the jejunum while maintaining pancreatic drainage/function via the newly isolated duodenum and formation of a jejunojejunostomy at its lower end) may be indicated following both partial and complete gastrectomy for persistent oesophagitis caused by non-gastric alkaline reflux, as this may cause intestinal metaplasia leading to secondary malignancy in the small intestine and the oesophagus if uncorrected.5,179,191 Since the introduction of laparoscopic surgery for gastric cancer by Kitano and Shiraishi in 1991,192 much emphasis has been placed upon the comparative benefits of laparoscopic interventions

238 The experience of treatment

for stomach cancer and there is a broad body of evidence to support the use of minimally invasive techniques such as endoscopy and laparoscopy in both the diagnosis and management of gastric cancers.171,193 Dulucq et al. (2005)180 argue that laparoscopic surgery has proven benefit in the treatment of gastric cancer, reducing intraperative blood loss, pulmonary and post-operative complications, the time required for the resumption of oral intake, and hospital stay, and improving cosmetic outcomes while maintaining cure rates.13,194,195 The role of lymphadenectomy remains controversial, some Japanese studies demonstrating better outcomes for larger invasive tumours although the tendency is growing for sentinal lymph node biopsy as a precursor to such extensive surgery.196–198 In a review of the literature, Brennan (2005) found that there was very little survival benefit from extensive lymph node dissection which is likely to be offset by the additional peri- and post-operative stress of such extensive surgery.171 Treatment outcomes for gastric cancer are also improved with multimodality treatments.178 The use of chemoradiotherapy is controversial, many of the organs adjacent to the stomach, such as the kidneys, small bowel and transverse colon being extremely sensitive to the effects of ionising radiation and tissue repair being compromised in previously irradiated sites;5 one study demonstrated the increased likelihood of wound dehiscence at thoracotomy sites previously exposed to radiotherapy.199 Consequently, post-operative chemoradiotherapy is increasingly being used as the standard treatment for the management of gastric cancer in the US, based largely upon the results of one randomised controlled trial,200 although a stronger evidence base has yet to be established for this practice by large, multicentre prospective randomised controlled trials.171 Definitive surgery for oesophageal cancer

As with stomach cancer, surgery remains the single most important treatment modality for carcinomas of the oesophagus and gastric cardia, the incidence of which is rising in the developed world. This is particularly apparent for adenocarcinoma which now matches squamous cell carcinoma in its incidence.201,202 Squamous cell carcinoma of

the oesophagus has been associated with lifestyle factors such as tobacco and alcohol consumption, whereas recent increases in the number of adenocarcinomas has been linked to a parallel rise in the incidence of chronic gastro-oesophageal reflux and Barret’s metaplasia in the developed world.5,201 Surgical resection of the tumour together with an adequate disease-free margin and lymph node dissection is the treatment of choice for localised tumours in the lower third of the oesophagus, while radiotherapy is the treatment of choice for unresectable tumours and those in the upper third of the oesophagus, which are less accessible for surgical resection.6 The choice of surgical procedure depends in addition upon the pre-operative staging and the performance status of the individual, tumours in the middle third of the oesophagus frequently being resected by means of a two-stage (Ivor-Lewis) procedure via an abdominal incision and the right fifth intercostal space.6 Approximately 50% of individuals present with resectable disease, but cure can only be achieved by en bloc resection of the tumour together with the regional lymph nodes, and any procedure failing to do this remains palliative, the individual’s prognosis being less than 12 months in the majority of cases.201 An exploratory laparotomy may be indicated, particularly for a total or radical oesophagectomy to facilitate the creation of a colonic interposition between the pharynx and stomach, although the stomach is most commonly used to replace the resected oesophagus, with the fundus being drawn up to anastamose with remaining tissue above the resected portion (see Figure 11.3). This may be contraindicated if there has been previous gastric surgery or other gastric problems, in which case a section of the colon or jejunal loop may be used, though these procedures carry additional operative risks.201 Until recently, it was thought that adjuvant therapies added little survival benefit to those capable of undergoing surgery, though one large-scale study recently conducted by the Medical Research Council has indicated that neoadjuvant therapy using cisplatin and 5-fluorouracil combinations together with radiotherapy may provide additional survival advantage over surgery alone.203 The quality of life of individuals following surgery for oesophageal cancer varies depending

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(a)

239

(b)

Figure 11.3 (a) Colonic interposition following total oesophagectomy; (b) gastric mobilisation and pull-through for carcinoma of the lower third of the oesophagus. Reproduced with permission from Blackwell Publishing, from Souhami R.L. and Tobias J. (2005). Cancer and its Management, 5th edition, p. 240.204

upon the surgery undertaken, one study suggesting that total gastrectomy with Roux-en-Y oesophagojejunostomy had fewer and less frequent symptoms than oesophagogastrectomy alone, though few individuals undergo such radical surgery.205 Several studies on the impact of oesophagectomy have found that hoarseness, gastric reflux, diarrhoea, and dysphagia were the commonest long-term side-effects of treatment, the latter being by far the most prominent in most individuals’ recollection,206–208 with dysphagia remaining the most enduring problem requiring intensive multiprofessional interventions by the speech and language therapist, dietician and the physician in order to guarantee sucessful rehabilitation.209 Dysphagia is a distressing symptom which affects the individual’s ability to eat and enjoy food, or engage in many important aspects of social interaction such as celebrating an anniversary or enjoying a drink with friends, and limiting the individual’s oral intake of food and fluids.210 Individuals may become bored with the

limited soft diet that they are able to tolerate and frustrated by the effort of trying to speak with a painful or hoarse voice, so patience, empathic listening and the use of closed questions that allow simple answers will be appreciated by the individual thus affected. Individuals should be encourged to eat acceptable foodstuffs little and often and may require nutritional support in the immediate post-operative period. Definitive surgery for prostate cancer

The surgical management of prostate cancer has elicited a great deal of debate and controversy in recent years, several options being available to the individual but few experts agreeing on the most appropriate course of treatment for a condition which is the third-largest cause of cancer-related mortality in the UK,5 with a death rate of 1520 per 100 000 men.211 The use of radical prostatectomy, consisting of resection of the prostate together with the prostatic urethra and seminal vesicles has grown in recent years, largely due to

240 The experience of treatment

the widespread use of prostate-specific antigen (PSA) testing, which has led to earlier diagnosis and a consequent increase in the number of cases that remain confined to the prostate capsule and with node-negative disease,5,212 although some surgeons are now undertaking prostatectomy for stage III cancers following the use of hormonal treatments to reduce tumour mass prior to surgery.5 Lymph node metastases are a poor prognostic indicator but the percentage of men presenting with disease-positive lymph nodes has fallen from 20–30% to less than 7% since PSA testing became commonplace,213 and radical retropubic or perineal prostatectomy is therefore usually carried out with curative intent, though its use is more widespread in the US than the UK and mainland Europe, where hormonal approaches to management are more commonly employed.211 Proponents of early prostatectomy suggest that it can achieve excellent control of the disease with minimal morbidity and impact on the individual’s quality of life,214 although erectile dysfunction and urinary incontinence are significant causes of postoperative morbidity,5,215 which can have a negative impact upon self-esteem, emotional and social well-being, and sexual relationships in the aftermath of treatment.216,217 Horwich et al. (2002) suggest that the clinical indications for radical prostatectomy are proportionate to the tumour grade and inversely proportional to the age of the individual,213 those with low grade tumours and advanced age being likely to attain their normal lifespan and enjoy a better quality of life without prostatectomy than younger men with high-grade tumours that are likely to metastasise and cause premature death. There is no conclusive evidence that radical prostatectomy prolongs life or reduces disease-related morbidity in those with localised non-metastatic disease, but it may be indicated in those with an anticipated lifespan of 15 years or more, age being an important determining factor since those over the age of 70 years are also more likely to experience urinary and erectile problems in the aftermath of their surgery.213,216 Attempts to develop nerve-sparing surgical techniques have met with varied success, as the visualisation and preservation of cavernous nerves during radical prostatectomy may not always be

possible.212 These techniques do not always ensure the retention of sexual function therefore,219 and may only be effective in 30–60% of individuals depending upon their age and the extent of the tumour.220 These figures may be overly optimistic, individuals themselves consistently reporting a much higher incidence of erectile dysfunction than those carrying out the procedure;220–223 96% of men complained of inadequate erectile function 3 months after surgery in Talcott et al.’s (1998) study.222 Sexual function may take a great deal longer than this to return to acceptable levels,220 particularly where nerve-grafting rather than nerve-sparing surgery has taken place. Kim et al. (2001) performed wide bilateral neurovascular bundle resection and nerve grafting during radical prostatectomy where nerve-sparing surgery was not possible, but long-term follow-up of their sample showed that sexual function did not return to a satisfactory level until the fifth post-operative month and much longer in some instances.224 It has been estimated that only 25% of men are sexually active at the start of treatment for prostate cancer although much of the research has been done on those receiving hormonal treatments with anti-androgens or radiotherapy rather than surgery,225 where the long-term effects of treatment may be equally debilitating.220,226–229 It is likely that surgery will become more commonplace for younger men with encapsulated disease identified by PSA testing, and assumptions about the sexual activity of these men cannot be made from historical antecedents. Kelly (2004) points out that male sexuality is a complex phenomenon which is shaped by personal, cultural, and social factors that go beyond the remit of physical potency and may, additionally, require men to renegotiate the sexual terrain of their relationships.230 Men undergoing radical prostatectomy have to learn to live with embodied changes and emotional, social, and sexual vulnerability, which they may not always have considered (or been informed about) at the outset of treatment when the main focus of their attention is upon the efficacy rather than the consequences of their treatment.230 One study by Gray et al. (2002) found that sexual issues were rarely mentioned in the immediate aftermath of surgery but surfaced as a major consideration in the months that followed;

Surgery

71% of their sample of 34 men continued to experience impotence while the remainder continued to have problems a full year after surgery.221 Erectile dysfunction and lack of orgasm negatively influenced the quality of life of half the men studied in one report,227 and prospective studies are required to further evaluate the true impact of prostatectomy on male sexual function and quality of life, particularly as early drug treatment with phosphodiesterase-5 (PDE-5) inhibitors decreases the risk of post-operative erectile dysfunction and promotes recovery in those with some degree of nerve patency.212,220 Recent studies have demonstrated the efficacy of the selective PDE-5 preparations sildenafil, vardenafil, and tadalafil and found them to be effective in the treatment of surgeryrelated erectile dysfunction after nerve-sparing radical prostatectomy,231 where they are thought to provide a measure of neuronal protection, reducing the apoptosis of cavernosal smooth muscle, improving endothelial function, stimulating neuronal regeneration, and eliciting a sevenfold improvement in the return of spontaneous erectile function within 2 months of treatment cessation.232 Nurses caring for individuals undergoing radical prostatectomy with or without nervesparing procedures should be aware, therefore, of the likely impact of surgery on the physical, psychosexual, and social functioning of the individual, the strategies available to overcome these problems, and the importance that men attribute to sexual functioning.223,230 Some suggest that greater emphasis should be placed upon the ‘healing work’ that men and their partners are engaged in to overcome the deleterious effects of their surgery, helping them come to terms with the biotechnical remedies required for the management of their impotence,221 while some argue that nurses should encourage a partnership approach to rehabilitation that encompasses the individual, their partner, and health professionals.233 Some studies have found that men are generally reluctant to discuss their feelings, or downplay the impact of their illness experience with health care professionals, fearing that they would ‘lose face’ or be regarded as unmasculine by admitting their anxieties,221,223 and there is no doubt that many find themselves vulnerable in

241

this situation,230 fearing that relationships may suffer as a result of their impotence.234 Many find it easier to talk to an empathic health care professional about sexual issues, with the possible exception of older men who may be embarrased at discussing such issues with members of the opposite sex.234 Men may need reassurance about their partners’ understanding and the long-term recovery of sexual function, particularly with newer drug therapies, while partners may need advice and support in dealing with their husband’s insecurity, anxieties and frustration at the slow progress of treatment. Nurses may greatly assist this process by giving positive affirmation, information, and time for discussion while identifying those couples who may benefit from further psychosexual counselling. Great sensitivity is required in this respect since many men appear to prefer pharmacological and physical solutions to the problem rather than counselling,234 the aim of information giving being to stress the normality and predictability of the problem rather than to pathologise it unnecessarily. Similarly, urinary incontinence, another common problem associated with radical prostatectomy needs to be dealt with sensitively, many men reporting anxiety about wetness, odour and body image changes which can restrict social activity and self-concept,215,235 while others demonstrate the impact of urinary incontinence on the daily lives, sleep patterns, and quality of life of those affected (see Research study 11.3).236 As with erectile dysfunction, there is a significant difference between individuals’ and health care professionals’ evaluation of its incidence,215 which appears to depend as much upon the definition or measurement used as any other factor, making comparison across different studies difficult.237,238 There is evidence that, as with erectile dysfunction, men about to undergo radical prostatectomy and their partners are ill-informed about the likelihood of urinary incontinence occuring,217 with many failing to remember it being mentioned pre-operatively.215 Information giving prior to surgery is crucial if the individual is to be prepared and equipped to deal with the impact that urinary incontinence will have.235 A role for the urology nurse specialist in pre-operative assessment and information giving, in which both the ‘best-case’

242 The experience of treatment

Research study 11.3 McGlynn B., Al-Saffar N., Begg H. et al. (2004). Management of urinary incontinence following radical prostatectomy. Urologic Nursing 24, 474–515.215 Aim of study The study evaluated the impact of a new, nurse-led histology clinic and pre-operative teaching programme for men undergoing radical prostatectomy, provided by a newly appointed urology oncology nurse specialist. Method Prostate symptoms in individuals undergoing radical prostatectomy were evaluated before and after surgery using the International Prostate Symptom Score (IPSS), in order to evaluate the effectiveness of educational interventions provided by a newly appointed urology oncology nurse specialist. The initiation of a nurse-led histology clinic enabled the newly appointed urology oncology nurse specialist to share the patient’s diagnosis, arrange further staging investigations, and discuss possible treatment options in a half-hour consultation which included the provision of written information and advice about pelvic floor training and self-management strategies. Patients were provided with a contact telephone number for the urology oncology nurse specialist who saw them a further two or three times prior to surgery to discuss the implications of their diagnosis and treatment, at which the issue of urinary incontinence was also discussed. The nurse specialist initiated a pre-operative referral to the continence and physiotherapy teams for a full continence assessment and pelvic floor training239 at that time. Advice concerning the avoidance of stimulants such as tea, coffee and carbonated drinks was also given so as to reduce frequency and urgency in the post-operative period,240 and a joint appointment with each of these services arranged for the day on which the patient’s urinary catheter was to be removed. Post-intervention followup was conducted via telephone interview using the IPSS, and results were compared with data from those who had undergone surgery prior to the introduction of the new service. Results The initiation of a nurse-led histology clinic reduced waiting times from an average of 3 months to 1 month prior to the new service being introduced, and significantly increased the length of time available for individual consulation with a health care professional (30 minutes as opposed to an average of 8 minutes previously). Patients had previously reported that they felt poorly prepared for surgery after the shorter medical consultation, in which their diagnosis, further investigations, treatment options, side-effects, and likely prognosis were discussed. Ninety-nine per cent of the men expressed satisfaction with the way in which the results of their histology were given in the new nurse-led histology clinic, these patients being fully staged, better prepared, and having already commenced hormonal therapy (where appropriate) by the time that they met with the surgical team. Pre-operative review of patients by the continence team increased from 32% to 100%, 85% being taught pelvic floor exercises as outpatients at least 2 weeks prior to surgery, and the rest on the day of their admission for surgery. Incontinence following removal of the urinary catheter fell from 72% to 49% with most men discharged as continent within 2 months as opposed to an average of 8 months prior to the service starting. Ninety seven per cent of patients reported that they were delighted, happy or pleased with their bladder control in comparison to only 68% treated prior to the introduction of the new service. Conclusions The study, while relatively small, demonstrated how the introduction of an innovative nurse-led service, the provision of pre-operative education, pelvic-floor exercise training and a collaborative approach to patient care improved treatment outcomes, self-management and quality of life in patients undergoing radical prostatectomy. It suggests that the introduction of the urology oncology nurse specialist role had made a significant impact on post-operative continence rates and overall satisfaction with service provision. Limitations While the study demonstrates a correlation in the increased amount of time spent by the urology oncology nurse specialist and clinical outcome measures such as post-operative urinary continence and time to incontinence-free discharge from the hospital’s continence service, these findings could have been anticipated given their comparison to data collected about the routine (but inferior) service provided before the introduction of the changes to service delivery described. The

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conclusion that these ‘significant’ improvements are solely attributable to the educational intervention of the urology oncology nurse specialist are unfounded however. Timely access to a variety of services including pre-operative review of patients by physiotherapists and the continence team had increased dramatically as a result of the changes, and while it may be true that the urology oncology nurse specialist fulfilled an important patient-education role, this cannot be divorced from the increased support and education provided by other members of the health care team. The study does not take adequate account of these ‘counfounding variables’, and thus the claim that the urology oncology nurse specialist’s educational interventions played a ‘significant’ role in improving overall patient satisfaction with oncology-related care may be unwise. It could be argued instead, that improvements in patient satisfaction and outcomes accrue from the interventions of each of these individuals. It may have been more appropriate to focus on the co-ordinating rather than the educational role of the urology oncology nurse specialist therefore, as this appears to have been strategically more important. Claims about the undoubted benefits of longer and more frequent pre-operative consultations with the urology oncology nurse specialist may have been easier to substantiate, but it seems unlikely that education was the sole intervention provided during these sessions. The study highlights the dangers inherent in evaluating changes to any service given the complex interplay between individuals, disciplines, and services engaged in the provision of patient care, the impact of multiple variables affecting patient outcomes, and the absolute necessity of drawing tentative conclusions from the data in such circumstances; however, it does describe an innovative and beneficial change in surgical services which merits further evaluation using a more rigorous methodological approach.

and ‘worst-case’ scenarios are discussed and realistic targets set for the recovery of urinary continence, has been described by one group of writers,215 and the urology nurse specialist may also be engaged with other members of the multidisciplinary team in teaching pelvic floor exercises as a means of reducing stress incontinence after surgery,239 or providing advice about the avoidance of caffeine-containing beverages which may cause frequency and urgency of micturition.240 Teaching the individual how to void their bladder completely, and co-ordinating input by other members of the health care team when urinary function does not return to normal is also an important nursing role.215 As with erectile dysfunction, there is also an important role for the partner as they will often be involved in assisting the individual with changes to their normal routine in order to accommodate urinary incontinence, and may themselves require support in making adequate adaptation to changes in activities of daily living that may mean changes in sleeping, travelling, and dressing arrangements to name but a few. The man will also need constant reassurance and encouragement to persist with selfcare activities, and may feel himself reduced to a child-like status when unable to control such basic physiological functions, so positive affirmation is crucial in developing and maintaining the therapeutic relationship.235

Definitive surgery in colorectal cancer

Surgery is the main treatment modality for colorectal cancers, although there has been little improvement in 5-year survival rates for those treated with surgery alone over the last 50 years; long-term survival depends largely upon the use of appropriate adjuvant therapies such as chemotherapy and intra-operative radiotherapy.241–243 Unlike gastric cancer, the vast majority (80%) of colorectal cancers are resectable,6 radical surgery with resection of local lymphatic drainage being more common than simple excision of the tumour, as the propensity of colorectal cancers to spread to other organs is great.5 In the absence of metastatic disease, the tumour is resected en bloc and bowel function restored as well as possible.241 Surgery may also be indicated in advanced disease – even in the the presence of hepatic or peritoneal metastases as it is the most effective means of debulking the tumour, external beam radiotherapy being too damaging to many of the vital organs lying in the vicinity of the bowel. Brachytherapy and intra-operative radiotherapy to the tumour bed are increasingly used as an adjunct to surgery,242–245 avoiding as they do the linear transfer loss of energy to surrounding tissues that may be mechanically shielded during the intra-operative procedure. Hahnloser et al. (2003)245 argue that intra-operative radiotherapy may elicit disease responses and an increase in long-term survival

244 The experience of treatment

even in advanced or recurrent disease although, as with all locoregional treatments, distal relapse remains problematic and systematic treatment with cytotoxic chemotherapy, most notably 5fluorouracil and leucovorin, may also be indicated for patients with incomplete resection or advanced disease.246 One large audit of 374 procedures demonstrated that there is little difference in the surgery performed in individuals with early or advanced disease, and very little difference in the peri-operative morbidity or mortality between each group.247 Surgical resection of colon cancer is also likely to prevent intestinal obstruction and other distressing symptoms such as pain, nausea, and vomiting, and is warranted even in advanced disease as a palliative intervention.241 Significantly more important in terms of the procedure undertaken is the site of the tumour, a right hemicolectomy being used for cancers of the caecum, ascending colon, and hepatic flexure, a transverse colectomy for tumours in the transverse colon, and a left hemicolectomy or sigmoid colectemy for tumours of the splenic flexure, descending colon, or sigmoid colon.241 In the majority of cases, hemicolectomy is completed by the re-anastomosis of the remaining healthy bowel tissue, but on occasions, a temporary colostomy may be formed for closure at a later date.6 The creation of a defunctioning colostomy prior to tumour resection may be indicated for those who have previously suffered from obstruction, perforation, or cachexia, and may be performed even in those with unresectable tumours in order to maintain bowel function in those receiving radiotherapy to other parts of the colon.5 In comparison to colorectal disease, rectal cancers pose a more difficult challenge to surgeons because of their relative inaccessibility within the lower two-thirds of the rectum.6 Prior to the introduction of laparoscopic techniques and the circular stapling gun, the vast majority of cancers in the lower two-thirds of the rectum were treated with abdominoperineal or anterior resection of the rectum, resulting in numerous post-operative consequences for the individual as a result of wide excision margins and the loss of the anal sphincter which led to incontinence and sensory deficits.241 It is now known that micro-

scopic tumour spread occurs for the most part circumferentially, particularly in the mesorectum, so total mesorectal excision is now carried out irrespective of the surgical technique used. This has reduced the need for wide clearance margins elsewhere,241 and sphincter-sparing surgery now constitutes 75% as opposed to 25% of all procedures performed, with an ensuing reduction in post-operative incontinence.241 Notwithstanding this, many individuals still experience the need to defaecate frequently and urgently as a result of a reduction in the size of the rectal reservoir, and there is also a risk of bladder and sexual problems if the pelvic nerves are damaged during the mesorectal excision.241 Abdominoperineal excision is still frequently used for tumours in the upper third of the rectum and for those occurring within 5 cm of the anal verge, sphincter-sparing surgery being unnecessary in the former case and contraindicated in the latter because of the paucity of tissue that will remain. It has been argued that colorectal surgeons have been slow to make use of the minimally invasive surgical techniques that have become commonplace in other surgical specialties,248 but their restriction to clinical trials has been due largely to concerns about port site recurrences, and difficulties inherent in forming intracorporeal anastomoses and ensuring the total, safe dissection of the tumour via such means.248 Early evidence suggests that laparoscopic colectomy may be as safe as open procedures and elicit recurrence and survival rates similar to traditional procedures while minimising post-operative pain, ileus, and hospital admission time.248,249 The clinical picture is far more certain in rectal surgery where transanal endoscopic surgery for rectal adenomas overcomes the problem of accessibility and is said to have ‘revolutionised’ procedures for the resection of early rectal cancers, with insufflation of the rectum with CO2 gas allowing clear visualisation and easy access to the upper and midle sections of the rectum.248 Transanal endoscopic microsurgery does not allow lymph node sampling or clearance during surgery,248 and its use tends to be restricted to those individuals unlikely to require conversion to open surgery, the more radical abdominoperineal excision of the rectum being more appropriate for those with advanced disease.241

Surgery

The formation of a colostomy or ileostomy in the aftermath of a colectomy or resection of the rectum may impact upon the individual’s real or perceived quality of life in a number of ways, including eating and drinking, elimination, working, sleeping, body image and sexuality, travel, and self-esteem.250 Great care should be taken in the positioning of any stoma therefore (Figure 11.4), and nurses undoubtedly have a role to play in discussing the impact and location of this opening, particularly where lifestyle issues such as sports or leisure activities, or religious and cultural beliefs which define which hand should be used to deal with bodily waste or clean bodily orifices may indicate a better alternative site than that originally planned.251 Post-operatively, they will require total parenteral nutrition until adequate healing of the bowel has taken place, and sips of fluid will only be recommenced once normal bowel sounds have returned and the

(a)

245

ostomy shows signs of activity in the form of flatus. The individual will be commenced on a very light diet for some time and may be disturbed by the appearance of the ostomy site, which some find visually offensive. Others may be reticent to touch it for fear of infecting or damaging it in some way, particularly in the initial stages when it may appear red or inflammed. Many will be fearful of eating a normal diet and anxious about their inability to control defaecation, and wary that the ostomy pouch may burst or become disconnected from the flange when mobilising, sleeping, or engaged in other social activity. Several authors have noted the relationship between bowel control and attainment of maturity or ‘adulthood’,252,253 and fear of embarassment may curtail some from normal social and sexual activity until they have gained confidence in both the ostomy and their ability to care for it. In the initial stages of management, many may feel themselves

(b)

Large intestine

2

1

3 Small intestine

Figure 11.4 (a) Position of bowel cancer stomas: (1) ileostomy, (2) transverse colostomy, (3) sigmoid colostomy; (b) ileal conduit. Reproduced with permission from Salter M. (1997). Altered Body Image: The Nursing Role, 2nd edition. London: Ballière Tindall, p. 181.251

246 The experience of treatment

infanticised by their inability to control their own defaecation or manage their stoma effectively, particularly when concomitant disability such as poor vision, arthritis, or poor manual dexterity accentuates their reliance upon others.254,255 Some may curtail social activites such as visiting friends, family, or public locations unless they know that discrete toileting facilities for the care of their stoma are available, while others may be fearful of partners’ or childrens’ reactions to the presence of a permanent or temporary colostomy, or of discussing taboo subjects such as death, sexuality, and elimination problems with those closest to them.252,256,257 One qualitative study found that 80% of respondents reported negative lifestyle changes in the aftermath of colorectal cancer treatment with ostomates, ranking changes in physical function, and spouses’ social roles and relationships as having been most deleteriously affected.257 This early finding is confirmed by later studies which found that social restrictions caused by the stoma extended beyond the individual to the whole family.258 The impact of colorectal surgery upon sexual functioning is rarely considered by health care professionals, who may regard a limited reduction in quality of life as a worthwhile tradeoff for survivorship – though evidence is mounting that the opinions of those affected by colorectal cancer and those caring for them are not always in alignment.259 Abdominoperineal resection in particular may occasionally cause males to have dry or retrograde ejaculations and, less frequently, impotence or a loss of sensuality, while pelvic exenteration in younger women with locoregional disease will cause loss of fertility and premature menopause. Stoma formation may cause changes in the individual’s social roles, body image, and sexuality requiring empathy, understanding, and open communication by nurses and other health professionals if such problems are to be overcome.260 Regrettably, there is evidence that communication deficits are common in this respect, with both individuals and family members reporting disatisfaction with the level of information provided by health carers.261,262 Practical help in particular is appreciated by individuals and their carers, which may include information about what foodstuffs might cause gas or malodorous

stool, those that may help to thicken watery stool or diarrhoea, and those helping to loosen stool in the aftermath of stoma formation. Surgery in the elderly

Sixty per cent of all cancers and two-thirds of all cancer deaths in the developed world occur in individuals over the age of 65 years,263,264 the median age at presentation for all cancers being 69 for men and 67 for women.263 Historically, age has been used by clinicians to deny surgery to elderly individuals on the basis that the risks are too great or the benefits too little in this age group to merit the discomfort and dangers associated with it, and despite evidence to the contrary, discrimination on the basis of an individual’s age continues to persist.265,266 Some have attempted to defend this practice on the basis of economic, moral, and philosophical grounds using the ‘equal worth’, ‘fair innings’ and ‘prudential lifespan’ arguments,267 but while these may well hold credence for some, the incontrovertible evidence in cancer care is that older individuals can and do gain substantial benefit and a better health-related quality of life from cancer surgery when other factors such as co-morbidity and social dependence are taken into account.268 Moreover, there is evidence that in the long-term, older people report either stable or better outcomes throughout their cancer experience than either an age-matched non-cancer population or younger people (70 years) and younger ( 7) or acidic (pH < 7) and cause extra irritation and scarring of the venous pathway. Supportive therapy, involving intensive use of antibiotics or other drugs, may limit the availability of veins for future IV therapy • patients’ feelings about repeated venepuncture – this is perhaps the single most important factor to be considered. Repeated venepuncture for blood sampling and administration of chemotherapy is at best uncomfortable, but may be the cause of considerable anxiety as treatment progresses and peripheral venous access diminishes. This anxiety may be influenced by the relationship between IV therapy and underlying illness. Fear of needles may develop and occasionally become phobic in nature. This additional stress compounds the problem. Veins disappear and each venepuncture becomes an ordeal for all concerned. Ways to minimise this include: establishing and maintaining a relationship of trust; explanation of procedures and

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involvement of patients in decision making; careful preparation to achieve maximum dilation of veins, together with skilful technique when placing or accessing the device; reducing discomfort by careful maintenance of the IV device once established; and consideration of patients’ thoughts, fears, and previous experiences.36 Venous access deteriorates over time, and it is important that technically proficient staff are available to reduce the likelihood of both physical and psychological trauma for patients, and the incidence of local toxicity and complications such as infection. Nurses are well placed to extend their caring role into this field of practice. Central venous access The advantage of central venous access is the absence of repeated venepuncture and reduction of the risk of local toxicities such as extravasation or phlebitis. McLure37 emphasises the importance to patients of secure long-term venous access: Patients with cancer often undergo repeated assaults on their venous system as part of their treatment. Multiple stabs must be endured to collect samples of blood, place IV cannulae for the infusion of clear fluids, antimicrobials, chemotherapy, blood and blood products. Many chemotherapeutic agents have a high osmolality, so are intensely toxic to vein endothelium. They must be administered via a central vein where they are diluted rapidly. Infusions of these agents may be given continuously or intermittently over a prolonged period of time. Without a long-term central venous catheter, the patient would be exposed to the risks of central venous cannulation with each course of treatment. Even with less toxic chemotherapy, peripheral venous access is often unsustainable and a central vein is the only reliable route of access. For both humanitarian and technical reasons, a long-term central vascular access solution is desirable [p.159].

Careful discussion of the management of central venous access devices with a patient is essential, as they are often asked to take on aspects of the maintenance of the device themselves. Infection is a major hazard, and home circumstances and personal hygiene are of prime importance. Dexterity and quality of eyesight also have to be taken into consideration when assessing someone’s ability to manage a central venous

device. Family members or friends may need to be taught the basic skills and principles involved in caring for the catheter at home. Written information should be provided to guide procedures, though these must be performed successfully both with and without supervision before a patient leaves hospital. Nurses have a responsibility to educate patients and others in the care of their device, and whenever possible should allow them to continue to manage the device when readmitted to hospital.38 Current technology and materials make it possible to maintain long-term central venous access effectively. There are a number of different methods and devices, including the following: • PICCs (peripherally inserted central catheters) are a group of single- or dual-lumen central venous access devices inserted in the cephalic or basilic veins at the antecubital fossa, and threaded along the veins in the upper arm until the tip rests in the superior vena cava.36 They do not require a surgical procedure to place them, and are well-suited for short-term central venous access. PICCs can be inserted at the bedside by a physician or a suitably trained and qualified nurse, provided that the patient has suitable veins in the antecubital fossa. This is an advantage for patients, but they must be able to care for the catheter effectively themselves. Rates of infection, clotting and malfunction are similar to those for other vascular access devices19,39,40 • a skin-tunnelled catheter provides safe and reliable long-term access with a low rate of infection. The most well-known catheter of this type is the Hickman catheter, developed by Robert Hickman in the mid-1970s. The catheter is made of an inert material such as silicone, which is sufficiently rigid at room temperature to allow insertion, but soft and flexible at body temperature.37 Its tip lies at the junction of the superior vena cava and right atrium, within the superior vena cava, or in the upper right atrium; it exits the skin midway from the exterior chest wall.32 The subcutaneous channel in which the catheter lies acts as a barrier to bacteria entering the vein from the skin.19,32 This type of catheter incorporates a Dacron cuff, which lies under the skin. Fibrous tissue forms around the cuff,

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keeping it in place and inhibiting tracking of micro-organisms along the outside of the catheter.41 Insertion can now be carried out percutaneously by anaesthetists and nurses,42 as well as surgeons, with advantages in terms of length of procedure and morbidity.37 Skin-tunnelled central venous catheters are the preferred option for long-term parenteral nutrition, vesicant infusion therapy, and continuous infusions19 Skin-tunnelled catheters are available with a single, double, or triple lumen, and are either open or closed (e.g. Groshong type with a slit valve) at the tip. Pneumothorax can occur during insertion, and once in place catheters can become occluded or infected, or provide a site for thrombus formation. There is a risk of infection at the exit site of the catheter, and the sight of the catheter coming out from the skin may be a reminder to some patients of their illness and need for treatment. Surgical procedures, weight loss, and hair loss from chemotherapy may add to the effect on body image and self-esteem. The presence of the catheter may be seen as another insult and can affect sexual function. Although the catheter may not be in use at home it may still be regarded as an intrusion in intimate situations. In one study, patients felt that long-term central venous access adversely affected their body image, affected their partner, and reminded them of their disease43 • Implantable port – a silicone catheter leading to a central vein is attached to a port implanted under the skin of the chest wall, which acts as a barrier to infection. Single and double ports are available.19 The advantage of an implanted port over a skin-tunnelled catheter is that when not in use, the port requires a minimum of care or maintenance. Access is provided by inserting a non-coring needle through the skin into a silicone septum in the port. The needle is cushioned by gauze and covered by a transparent dressing to reduce the risk of it becoming dislodged and leading to extravasation.32 Inserting the needle correctly, and avoiding the use of small syringes that create high pressure within the catheter, are also important factors in minimising the risk of extravasation.32 Implantable ports are ideal for intermittent therapies and for

patients who are unable or unwilling to care for an external device, who are concerned about altered body image, and who are particularly active physically (for example, patients who swim frequently).19 The disadvantage of an implanted port is that it involves using a needle, although local anaesthetic cream can reduce the discomfort of inserting the needle. Needles can be left in place for up to 7 days,19,32 after which time they must be replaced if treatment is to continue. After a course of therapy, the port is heparinised and the needle removed. Most port manufacturers state that ports should be flushed with sterile heparinised saline every month, however Hayden and Goodman indicate flushing every 3–4 months.19 A recent German study of patients with breast and gynaecological cancer showed that the majority were satisfied with their port, were able to work, and did not feel disturbed during general activities.44 Arm mobility was minimally affected, and more than half found that the port gave them a feeling of security. One-third of patients were not satisfied with the care they received after leaving hospital, possibly due to the inexperience of family doctors in the management of implantable ports.

Infusional ambulatory chemotherapy Cancer chemotherapy has traditionally been administered using a schedule of intermittent doses, requiring patients to be admitted to hospital or to attend as day cases and separating them from home, family and work.45 Home-based chemotherapy is now possible as a result of technological innovation and the introduction of continuous and portable infusion devices. It is claimed that these devices offer advantages in terms of maintaining lifestyle and minimising disruption of day-to-day activities.46 However, the benefits of home chemotherapy and the cost of changing the way services are delivered in the UK has yet to be conclusively determined,46 and its precise role therefore remains unclear.47 Cancer care provided in the home setting is expanding to include high-tech interventions, and community

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nurses are increasingly involved in providing support.48 In their small study of district nurses’ experiences with continuous ambulatory chemotherapy, Turner and Pateman identified the need for further research into the management of ambulatory chemotherapy to support the development of best practice recommendations.48 Home chemotherapy is thought to enhance patients’ independence and sense of control, particularly if it is self-administered.18,49 The opportunity for patients to be actively involved in their treatment can encourage a positive attitude, and patients receiving treatment at home have reported psychological benefits because they are among people and possessions that are important to them.50 Patients also appear to be more able to tolerate drug-related side-effects in this setting.18 While the families of people with cancer can feel helpless and inadequate, home chemotherapy may enable them to become more involved and to give greater assistance and support. Chemotherapy at home reduces the risk of exposing immunocompromised individuals to the harmful pathogens found in hospitals.18 Overall, the benefits of home chemotherapy, including convenience, the opportunity for active participation, and cost-effectiveness, may well outweigh the disadvantages, though these must be considered carefully. In hospital, staff are always available to assist and support patients when needed, whereas this may not always be the case at home. In spite of recent increases in the number of community nurses who have the skills and knowledge to manage IV therapy in the home, it is not possible for them to be present round the clock. For this reason, it is vital to make careful decisions with patients about whether home chemotherapy is suitable and likely to be successful. Some patients may not be able to undertake the procedures necessary for maintaining treatment at home, either because they are confused by the instructions, because they are fearful, or because there is a physical reason why some part of the care of their drugs and infusion device may not be possible. Some people may prefer the feeling of security that being in hospital can give, and may not wish to take on a programme of treatment at home. Complications do occur, and can cause severe anxiety or stress for some patients.38

• Catheter-related complications include extravasation of drugs and clotting within the catheter, which may lead to occlusion. Loss of patency often occurs after failure to switch the pump on, during periods of malfunction, or if the catheter is not flushed using the correct solution or the recommended technique.49 Patency can usually be restored with a fibrinolytic agent.51 • Drug-related complications can be caused by precipitation of a drug,45 or by toxicities such as bone marrow suppression, mucositis, diarrhoea, or palmar-plantar erythrodysesthesia syndrome (i.e. ‘hand–foot syndrome’, where high-dose continuous infusion of 5-FU causes pain, tenderness, and erythema of the palms and soles). Such toxicities may necessitate a break in treatment. • Infusion device-related complications can occur as a result of leakage or rupture of the drug reservoir,49 pump malfunction,49,50 or incorrect infusion rate. Depletion or failure of the pump battery can also be a problem.45,52 Consideration must also be given to the changes in body image caused by the location of the central venous catheter, which may be connected to an infusion pump for days or weeks at a time. Some patients find even a portable pump cumbersome, and day-to-day and sporting activities and holidays may become difficult or intolerable. Chemotherapy, which takes a considerable time to complete, may be difficult to tolerate for patients who prefer to get their treatment over and done with as quickly as possible. When considering whether to begin a programme of home chemotherapy, a number of factors must be carefully weighed. Careful discussion with patients about the implications, and comprehensive teaching are essential. Hayward advocates a home visit before administering chemotherapy to assess a range of factors including the patient’s condition, social circumstances, home environment, and vascular access.53 Further key objectives of careful assessment of the patient and their environment include: safety of the patient and nurse, safe transportation of drugs, safe administration by suitable trained staff, preparations for emergency situations, and arrangements for follow-up care.47

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Patients must be willing participants in their own care, and either they or their family and/or friends must be comfortable with and skilled in the operation of the infusion pump and venous access device, as well as able to respond to the effects of the chemotherapeutic agent in use.49 From a medical point of view, disease stage and the patient’s general health status must be such that home chemotherapy is appropriate and feasible.54 Thought must be given to the choice of infusion device: given the effect of central venous catheters on lifestyle and activities, it is important to meet each individual’s needs as closely as possible. A wide variety of ambulatory infusion pumps is now available, from external syringe drivers to totally implantable systems, including disposable pumps.18 One type may be more appropriate than another, given a person’s particular circumstances.38 Fernsler and Cannon point out that the objectives of a learning programme for patients include adherence to a therapeutic regimen, increased satisfaction, enhanced self-determination, increased ability to manage symptoms, and enhanced recovery from surgical procedures.55 However, increased knowledge is possibly the outcome that is most often seen in nursing documentation. Before conducting a programme of learning it is important to consider the process of learning and the factors that affect a person’s ability to learn, both in everyday situations, and in potentially more stressful health care-related situations. Patients facing the possibility of a central venous catheter, continuously or intermittently infused medications, the need to become familiar with and operate infusion equipment, as well as the likelihood of drug-related side-effects, are not in an easy situation for learning. Initially they may find it difficult to become motivated, as it is likely that they are feeling frightened and anxious, powerless and out of control. Sometimes the amount of information to be absorbed about their illness and their treatment can be overwhelming. They may also be anxious about personal issues, and the environment in hospital is often intimidating and stressful.38 Patients may not share a common language with hospital staff, there may be an organic obstacle to communication such as dysphasia, and literacy may be limited. Culturally,

patients may feel ill at ease with the organisation of Western hospitals and treatment, and may be suffering from the effects of their illness and/or its treatment. Studies have shown that patients receiving chemo- or radiotherapy can use targeted information to learn about their treatment and carry out self-care activities, and want these to be presented in an organised and pragmatic way.56 Dodd and Miaskowski describe the development of one selfcare symptom management programme for people receiving aggressive chemotherapy that focuses on information about disease, treatment and sideeffects, instruction in essential self-care skills, and ongoing supportive nursing care: self-care agency is enhanced through the provision of relevant information, the enhancement of self-care skills, and the provision of support . . . Nursing is needed when there is a deficit between the patient’s self-care agency and the existing therapeutic self-care demands [p.302].56

Initial assessment of patients’ needs should include information about their response to their diagnosis, their communication style, and their ability to read and understand written information. It may be useful for nurses to ask patients to explain their understanding of their situation in their own words, to provide a basis for further explanations. Supporting written information should be provided so that patients and their families are able to refer back to relevant points about the illness and treatment when they are at home. It may be necessary to begin with simple information or instructions, and to move towards more complex information gradually, as a relationship is established between nurse and patient.38,57 Patients must feel able to ask for further instructions if they feel worried or unsure, and a contact number should be provided for this purpose. Listening and observing a patient’s demeanour to become familiar with characteristic mannerisms and anxieties is always as important as giving explanations. A successful learning programme depends on individualised and mutually identified goals and objectives. Verbal information ought be supported by clear and effective written information. Learning can be formal or informal, and can include

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videos, booklets, or audio tapes, or a combination of these. Learning about treatment can help to reduce fear, increase feelings of being in control, make treatment regimens more manageable, and make taking responsibility for one’s own care a more positive experience.

Decision making and involvement The multidisciplinary team plays an increasingly important role in identifying the most appropriate care and treatment for people with cancer. Under the terms of the NHS Cancer Plan,58 surgeons, radiologists, pathologists, oncologists, nurse specialists, palliative care specialists, and others work together to provide appropriate investigations and treatment and deliver co-ordinated care.59 Reports from practice reflect the strengths of flexible approaches where patients are able to initiate access to multidisciplinary team members quickly and according to their needs. Effective teams can help patients to remain involved in decision making: By having written protocols, guidance and regular communication between team members, the patient was given timely and appropriate information, allowing her to make informed decisions about her own care . . . Effective communication between team members, from primary care through to supportive care, is essential. But, despite these protocols being in place, the decision to access services ultimately remains in the hands of the patient.60

Discussions with patients about treatment choices should, it has been suggested, address two fundamental issues: preferences about the amount and type of information provided, and preferences about participation in decision-making.61 Fallowfield argues that a clear distinction should be made between the desire for information and the wish to assume responsibility for decision making: her research suggests that improvements in quality of life for patients facing choices about treatment may be linked primarily to levels of satisfaction with information received.61 She emphasises the importance of providing objective, patient-centred information supported by information booklets, audio and video tapes, and web-based resources such as Cancerbackup (www.cancerbackup.org.

uk), the National Library for Health (www.library. nhs.uk), and DIPEx (www.dipex.org). Active involvement in care can enhance the patient’s experience and make use of patients’ knowledge of their own bodies. It helps to ensure patient satisfaction and a sense of control during treatment.41 Patients should be informed of the early signs of extravasation of vesicant drugs, for example, or the sensations associated with anaphylaxis, so that they can alert health care professionals promptly. Weinstein41 emphasises the importance of intuitive patient and family education, alongside skilled technical care, in the work of health professionals involved in IV therapy, and sets out some key teaching points, summarised below: • assessment of patients’ and families’ need for knowledge about disease and treatment • learning outcomes based on patients’ needs • participation in decision making • appropriate selection of teaching and learning methods and materials • ongoing evaluation of patients’ and families’ learning in relation to original learning outcomes • documentation of teaching and learning process (p.491).

Handling cytotoxic drugs and disposal of waste The actual or potential hazards of exposure to cytotoxic drugs are such that careful attention must be paid to safe handling and disposal of waste. Cytotoxic drugs are known to be potentially mutagenic (i.e. induce genetic mutations), teratogenic (i.e. produce physical defects in the fetus), and carcinogenic (i.e. induce tumours), and some studies of hospital staff have demonstrated an incidence of chromosomal abnormalities and excretion of mutagenic products.1,18,62 Drugs may be inhaled when powder or liquid is ‘aerosolised’ or emitted in a fine airborne powder or spray during reconstitution, or if spillage occurs during preparation or administration. They may also be ingested or come into contact with the skin.18 They therefore represent a health risk for

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staff regularly involved in their preparation and administration. The safest way of working with cytotoxic drugs is to develop and apply policies and guidelines to reduce the possibility of direct exposure to them. Studies have shown that relevant safety measures can reduce the level of exposure to potentially hazardous substances.1,18 Cytotoxic chemotherapy presents two levels of health risk: first, a definite risk arises from the fact that a number of chemotherapeutic agents are known to be extremely irritant and to produce harmful local effects after contact with the skin or eyes; second, a potential risk exists because such substances have been shown to cause changes in humans on the cellular or genetic level. Local effects of exposure to cytotoxic drugs include dermatitis, inflammation of the mucous membranes, excessive lacrimation (production of tears), pigmentation, blistering, and a range of other allergic reactions. Systemic effects include dizziness, hair loss, headaches, blurred vision, light-headedness, cough, pruritis, and general malaise. The Health and Safety at Work Act (1974) and control of substances hazardous to health (COSHH) regulations published by the Health and Safety Executive (HSE) make it mandatory for employers to identify hazardous substances in use, people at risk, and measures to ensure safe handling and an effective response to accidental exposure and adverse events.63,64 Guidelines for preparation, handling, and management of spillage must be in place before nurses handle chemotherapeutic agents. In ideal conditions, safety cabinets provide a balance between protection for the operator and the necessity to handle equipment and products. Cabinets and isolators should be located in a designated area with restricted access. Adequate levels of safety must be provided for both patients and staff preparing and administering drugs, using, for example, vertical laminar flow cabinets or isolators.18 Some form of protective clothing must be worn at all times when handling cytotoxic agents, though the degree of protection required depends on the type of preparation facility available, the nature of the agents being handled, and the extent of the exposure. The minimum requirement is for an overall and gloves of suitable quality; additional protection can be provided by non-absor-

bent armlets, plastic apron, eye protection, and face mask. Disposable gloves should be worn throughout preparation and checking of cytotoxic chemotherapy. Recommendations about the best type of glove material vary, but when selecting gloves the user must be certain that the material is of a suitable thickness and integrity to maximise protection.65 Double gloving is recommended for dealing with spillages.18 The key to reducing the risk of exposure is good technique. The Health and Safety at Work Act63 and COSHH regulations64 (see www.hse. gov.uk/coshh/) provide important additional guidelines on safe working environments and handling hazardous substances, including management of spillage and disposal of waste. All possible precautions should be taken to avoid accidental spillage, though staff should be aware of the approved written procedure for managing spillage should it occur. Staff must receive education and training in procedures and guidelines, to a level appropriate to their level of involvement with the handling, preparation, or administration of cytotoxic drugs.66,67 A Dutch survey highlighted a number of issues related to the handling of cytotoxic chemotherapy.68 Out of a total of 824 respondents in 10 hospitals, 750 (91%) wore gloves when administering drugs, but only 173 (21%) wore a gown or an apron; 634 (77%) were aware of the risk posed by ‘aerosolisation’, but 157 (19%) did not believe that opening a glass ampoule was accompanied by any risk; 775 (94%) felt that protective measures were adequate, though 280 (34%) attached bags or bottles to IV administration sets with the bag or bottle on the stand. Researchers concluded that nurses do not always follow safety guidelines or use recommended protective measures, because they may be perceived as inconvenient or unnecessary. Nurses may take their own safety less seriously than that of their patients.

Extravasation A number of cytotoxic anti-cancer drugs are known to cause venous irritation; others, known as vesicants, can cause intense local tissue inflammation and pain, progressing to necrosis and

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ulceration if they leak from the vein during administration. The escape of a chemotherapeutic agent from a vessel into the surrounding tissues by leakage or as an involuntary injection of a drug into the tissues is known as extravasation.69 Tissue damage following extravasation of a vesicant drug can be severe and long term. Incidence in adults is estimated at between 0.1% and 6%, although this may be an underestimate, and incidence may be higher, for example, with implantable ports.32,69 It is essential that nurses know which of the drugs they are administering are vesicants, as well as how to recognise and manage extravasation should it occur. Extravasation can normally be avoided by using good administration techniques, but even with the greatest care and skill accidents can occasionally occur. The incidence of extravasation is low among experienced cancer nurses in specialised settings, but higher in general hospital settings. A number of factors can increase the risk of extravasation: • additional difficulties present during cannulation or administration of drugs (for example, if a patient is very young, elderly, debilitated, or confused) • the IV cannula may be placed in an awkward position where monitoring of administration is more difficult (e.g. over a bony prominence or joint) • some equipment (such as steel needles, including winged infusion devices or ‘butterflies’) is unsuitable: a plastic cannula should be inserted into a vein • small and fragile veins should be avoided, and limbs affected by lymphoedema or neurological weakness • vascular access devices (e.g. skin-tunnelled/nonskin-tunnelled catheter, implantable port) may be indicated if patients have small, fragile veins or require long-term administration/continuous infusion of vesicants • optimal peripheral access is provided by the large veins of the forearm (e.g. posterior basilic vein) • use of veins in the hand and wrist carries increased risk of damage to tendons and nerves should extravasation occur

• poor standard of practice (for example, incorrect amount or type of diluent, failure to observe the IV site correctly while drugs are administered, or use of inappropriate peripheral vein as opposed to central vein).19,36,41,69,70 Early recognition of extravasation is imperative to minimise potential tissue damage. The following signs and symptoms of extravasation can occur singly or in combination: • swelling (most common) • stinging, burning, or pain at the injection site (not always present) • redness (not seen initially) • lack of blood return into the syringe (though this is not always indicative of extravasation) • pressure or resistance to syringe plunger or infusion.27,41,69 Implanted ports and skin-tunnelled catheters are considered to be safe and reliable means of drug delivery, but extravasation can also occur with these devices. The consequences in these circumstances are very serious, and careful note should be taken of any complaints of pain or change in sensation around the port or catheter during administration. If extravasation from a central venous catheter is suspected, the infusion or injection must be stopped immediately and medical staff notified. Vesicants can be divided into non-DNAbinding vesicant drugs (e.g. vinblastine, vincristine, vinorelbine, docetaxel, paclitaxel) and DNA-binding vesicant drugs (e.g. nitrogen mustard, daunorubicin, doxorubicin, epirubicin, idarubicin, dactinomycin, mitomycin C).69 NonDNA-binding vesicants often cause immediate damage such as burning and ulceration, but are less likely to lead to erosion of deeper structures, and healing may take place within 3–5 weeks. DNA-binding vesicant drugs tend to cause both immediate damage and slower ongoing tissue necrosis.32 While there is agreement about the signs and symptoms of extravasation, its management remains controversial. However, if there is reason to believe that extravasation of a vesicant agent has occurred, it is essential that immediate action is

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taken to minimise tissue damage and prevent further serious consequences. An extravasation kit containing the materials and equipment (including all appropriate antidotes and diluents, and a copy of extravasation policy and procedures) should be available whenever vesicant drugs are administered. Management of extravasation often includes the following steps: 1. stop administration of drug 2. stop fluid flow if drug is administered through side arm of free-flowing IV infusion 3. attempt to aspirate any residual drug 4. remove the IV access device (if peripheral) 5. apply heat with vinca alkaloids, or cold with anthracyclines, as recommended 6. prepare antidote and inject subcutaneously around the site of the extravasation using a 25G needle (according to institutional policy and procedure) 7. elevate the affected limb 8. notify medical staff 9. document the incident and if necessary photograph affected area 10. request advice from a plastic surgeon if necessary 11. instruct the patient in care of the affected area, ensure adequate systemic analgesia, and plan follow-up.18,19,27,36,41 Veins that have previously been punctured are not suitable for administration of vesicant drugs due to increased risk of leakage. Following an unsuccessful attempt at cannulation, a different vein in the opposite limb should be used. If this is not possible, a site in the same vein may be used, but should be proximal to the previous puncture site.32 When using an existing peripheral site, it is essential to ensure that the site is adequate and appropriate (e.g. not over a joint or the wrist) and ideally less than 24-hours old. Drugs should not be administered if the site is red, swollen or painful, or if there is evidence of infiltration of fluids into the surrounding tissue.32 Before administering vesicant drugs through a cannula or catheter, brisk blood return should be confirmed, and there should be easy flow of fluids. Observation of insertion sites should be continuous, and when

vesicants are administered peripherally, patients should never be left unattended.19

Caring for patients receiving chemotherapy Patients’ experiences

Cancer patients undergo numerous blood tests and are often required to have an IV cannula sited for chemotherapy or supportive therapy (for example, blood products or antibiotics). They are also subjected to a variety of diagnostic tests including bone scans, computerised tomography (CT) scans, lumbar punctures, and bone marrow aspirates, all of which require the insertion of a needle. Griffin et al. found that patients ranked having a needle inserted in the top ten most difficult psychosocial cancer-related symptoms, which gives an indication of how important this event is for many patients.71 Cohn72 writes: As my veins become increasingly scarce, mobile and collapsible, I sometimes had to be needled as many as five times, because laboratory technicians would not listen when I said that Vacutainers did not work any more [p.1008].

Technical skill is not the only requirement when inserting a peripheral venous access device. It is just as important to understand the fears and anxieties that surround the cannulation procedure, and the implications of the presence of the device during hospital admission. The intrusion and restriction caused by the siting of an IV cannula can affect a patient’s body image, and the cannula can be a constant source of anxiety while it is in place.73 Kaplan suggests that once an IV infusion is in progress, anxieties may change, but do not necessarily diminish: questions such as ‘Will the drip stop or run dry?’, ‘Will the pump alarm and if so why?’, and ‘What if the cannula is dislodged or becomes occluded?’ can still persist.74 Concerns over a cannula being dislodged may not always relate to fear of having another device put in place; it is sometimes a matter of wanting to avoid inconvenience and delays in being treated.75 Patients also worry about the security of IV devices. One report describes how a patient needed

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a family member present during every infusion because a previous infusion had leaked into subcutaneous tissues.76 Anxieties may focus on the contents of injections or infusions, in particular possible side-effects, or the fear that blood may be incompatible or infected.75,77 Patients may be disturbed by changes in routine, for example if chemotherapy is administered in a way with which they are not familiar.74 Nursing interventions play an important part in allaying patients’ fears and in ensuring that treatment is correctly and efficiently given. The manner in which nurses undertake the care of IV sites, and the way in which drugs are administered has an important influence on whether patients feel safe or anxious. Patients like to feel that IV devices are secure and will remain in position:75 a nurse may ‘know’ what should be done, but a patient knows what feels best, making it important that the two discuss the care involved in IV therapy.78 Fear and anxiety stirred up by a painful experience can persist for some time: measures taken to comfort and reassure a frightened person may need to continue after the end of the procedure that caused the distress. Nurses often leave once a procedure has been completed, and do not realise the impact of post-event stress. Skill and familiarity on the part of nurses handling and using equipment, and regular checks to make sure that equipment is functioning correctly and that infusions are running properly and safely, can be emotionally supportive for patients and their relatives and reduce levels of anxiety. Mobilising patients’ strengths and coping strategies, using relaxation or distraction techniques, being able to listen and talk, paying attention to detail, and experience and confidence have been found to be highly valued approaches. Inexperienced nurses:75,76 . . . can produce fear in patients . . . sensitive nurses who feel unsure of a particular procedure will ask someone with experience to assist them [p.105].74

Patients may feel more in control of their IV therapy if they are given the opportunity to become active participants, for example by choosing the site for their IV access device. One study suggested that patients who were able to choose

the arm from which to donate blood experienced less discomfort and pain when compared with patients who were not given a choice.79 Being able to care for oneself even in a small way is an important dimension of health care,80 even when patients are faced with the emotionally difficult experience of being confined to bed with an IV infusion. Providing patients with options and choices may have an important influence on behavioural and physiological stress reactions.79 Patients may feel a greater degree of control over their situation if they have a say in the scheduling of treatment. (For example, they may want to have treatment overnight to give them more freedom during the day.) Having a choice about where an IV device is placed may ensure that it remains effective and in place longer, and that treatment is completed with fewer interruptions.81 It is important to have the opportunity to participate and to foster a sense of independence and control in a potentially difficult situation. Loss of control

Nurses are constantly involved in helping patients to meet the challenges of daily living. Interventions focused on physical care are likely to be evaluated frequently, providing a means of monitoring the quality of this aspect of care. It is as important to understand the role of other nonphysical factors in maintaining quality of life. Control has been described as the belief that one has at one’s disposal a response that can influence awareness of an event. Loss of control, a feeling that chemotherapy is ‘done for you or done to you’, is a frequent experience for cancer patients; having a blood sample taken can feel like ‘relinquishing control over access to personal space’.82 Feelings of loss of control, together with possible lack of understanding about the rationale and procedures related to chemotherapy, contribute greatly to anxiety. Greater knowledge and understanding can help to restore part of the feeling of being in control. As one researcher with personal experience of treatment for Hodgkin’s disease83 puts it: I decided before being hospitalised . . . that my best chance of staying sane lay in using my skills as a researcher and ethnographer to demystify my disease

Chemotherapy 289 and its treatment, and thereby to restore some sense of control. Treatments of indefinite length and uncertain outcome invariably inspire fear and rage, and rob the cancer patient of much of his personal autonomy. In such circumstances knowledge is the only kind of power available. It imposed order, pattern and meaning to a life that had suddenly taken on a frighteningly random character, and so made it possible to manage the fear [p. 316].

Research has shown that there is a positive relationship between people’s sense of perceived control and health-related outcomes. There are two main types of perceived ‘locus of control’: internal and external. In the management of chronic pain, for example, internal locus of control, which reflects a belief in personal control over behaviour, has been related to the use of more effective coping strategies; external locus of control, in which the role of chance and powerful others are seen as more influential, has been related to maladaptive strategies.84,85 Involvement in decision making and taking personal responsibility for aspects of health care can be constructive: . . . my relationship with my oncologist continued to change, involving more and more negotiation and compromise . . . as my understanding of the treatment processes expanded and my physical condition deteriorated. I brought all my capacities for identifying and analysing pattern to bear on my body’s increasingly violent response to chemotherapy, using every treatment as an opportunity to try out my theories on my oncologist. He came to respect my ability to observe and report sensitively and accurately . . . as I began to negotiate more aggressively (and more successfully) for lower doses. This was no fiction of participation; it was based on a mutual understanding of chemotherapy . . . [p. 333].83

Patients may choose to adopt a lifestyle that helps them to foster the sense that they are ‘fighting’ their illness, the side-effects of treatment, or both. Feelings associated with chemotherapy

Receiving chemotherapy has been likened to riding a roller-coaster: a study of women with breast cancer found that the rapid changes in physical state and psychological ups and downs that occurred with cycles of adjuvant chemother-

apy made ‘normalisation’ more difficult.86 Chemotherapy can seem mysterious and frightening, both before and after it has been experienced at first hand: I’ve always said, all my life, even if I was dying, I would refuse chemotherapy because no way would I put myself through what I feel other people go through for all I didn’t know what the process involved. You know, you can see people who’ve gone through it. The guy in church had, er, lung cancer, and he went through chemotherapy, but he was marvellous. I mean, he came every week until, towards the end, he couldn’t stand up, he was so weak, and all his hair had dropped out and he had a gaunt expression. But that was probably the cancer because it overtook him and he died eventually. So I really knew very little about it, other than what people look like [p.317].86 We were like robots . . . There is a kind of disassociation . . . you just know that you have to detach yourself . . . look aside . . . I would turn up for chemotherapy, put out my arm for them to do whatever they wanted; I tried persuading myself; they pricked me . . . but today I don’t want to be touched . . . I don’t want to undress . . . I don’t want anybody to come near me. This is my trauma [p.61].87

Events that may seem trivial to health care professionals can assume major proportions for patients, from the frustration of waiting for blood results to indicate whether treatment can go ahead, to the exasperation and rage experienced when an injection has to be postponed. Events that have not been anticipated and prepared for are often traumatic, as are changes in routine: any event that occurs unpredictably, regardless of the cause, should be expected to produce feelings of helplessness and outrage.72 Fear and anxiety are felt both before and after chemotherapy treatments, and have numerous causes, including the possibility of side-effects, venepuncture, feelings of isolation or loss of independence, just being in hospital, or conversely having to manage treatment and equipment at home. Conflicting emotions often arise when patients relapse after treatment, when either further chemotherapy is recommended, or treatment is halted. The end of chemotherapy can be viewed with both delight and fear. The feelings of security and opportunities to discuss worries that come with regular

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hospital visits can be lost. Patients sometimes experience the fear that without chemotherapy their illness will recur, and relapse can provoke intense feelings of vulnerability and mortality. It is also possible that some patients will feel better able to cope with chemotherapy the second time around. Nurses need to be aware that chemotherapy evokes strong and varied emotions that need to be expressed and received with understanding and compassion. Buckalew76 proposes three broad approaches to psychosocial care: 1. helping patients to identify and utilise sources of support to alleviate anxiety (for example, support from the family or from relaxation exercises or guided imagery) 2. providing the opportunity to ventilate or express feelings about treatment and sideeffects freely and without judgement being passed: anxiety is a normal reaction to the stress and trauma of chemotherapy 3. referral to appropriate members of the multidisciplinary team (for example, stoma therapists, breast care specialists, the palliative care team, cognitive therapists) or user support groups. Isolation

Physical weakness, an inability to write or concentrate, and forgetfulness can reduce a patient’s ability to take part in social and recreational activities. Kathy Charmaz describes suffering in chronic illness as much more than physical discomfort: it is a ‘loss of self’, a ‘crumbling away of former selfimages’ without ‘development of equally valued new ones’ (p.168).88 Many of the most valued parts of people’s lives, including their social life, careers, relationships, outward appearance, and self-respect can be stripped away. Patients may be apprehensive about the ability of family and friends to adjust to their illness and treatment, and sometimes initial attentiveness by families and others is followed by withdrawal at what is a crucial time. A study of the social and emotional effects of chemotherapy89 emphasises the importance of family relationships as well as the difficulty with which these are sometimes sustained:

Family [members] who did not reside with participants popped in and out of their lives . . . Mostly they acted as a distraction, and because they were not living with the cancer and chemotherapy . . . they were able to sustain detachment unlike spouses and partners [pp.4–5]. For the majority of participants, partners/spouses were a source of support, encouragement and great strength. Living with someone undergoing chemotherapy treatment was obviously a cause of distress, and intensity of emotion, anxiety and the possibility of an unpredictable illness trajectory often resulted in tensions between participants and their spouses/partners [p.5].

A sense of isolation can be linked with a feeling of being unable to communicate with nursing staff, or that nurses are too busy to ‘waste time’ talking to them.90 However, nurses are well placed to help patients to manage feelings of isolation. A willingness to listen, to identify needs and worries, and to collaborate to maintain physical and emotional well-being can contribute to feelings of being included, as opposed to being on the outside. Personal growth

Cancer is distressing and disruptive, but there are aspects of the experience (for example, improved personal resources, enhanced sense of purpose, and changes in life priorities) that patients may find beneficial.91 Research has shown that perceived social support and ‘approach’ coping strategies (positive reappraisal, planned problem-solving, confrontive coping, and seeking social support) can promote positive adjustment.92 Among married women with breast cancer, perceived support from husbands and contact with breast cancer survivors who felt that their experience had benefits have been shown to be positive in terms of ‘post-traumatic growth’, including positive changes in views of self, sense of relationship with others, and philosophy of life.93 The opportunity for personal growth during chemotherapy can and should be conveyed to patients, because the heightened self-esteem that results from that growth will increase patients’ stamina during treatment and diminish the likelihood of their discontinuing therapy prematurely.72 Nurses can offer guidance to patients

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searching for a way of regaining their self-esteem. One approach is jointly to set goals that are achievable and consistent with realistic expectations. Goals are sometimes therefore necessarily short term and based on a ‘take each day as it comes’ philosophy. It is often important to provide patients with encouragement to maintain their commitment, and achieving goals may not always become easier as time goes on. Side-effects may get worse, or new ones might appear, and if patients experience a deterioration in their overall situation, some goals may have to be reassessed. Steps taken and strategies agreed during an initial course of chemotherapy may positively influence a patient’s ability to manage subsequent courses, and could explain why some people are better equipped and more assertive the second time around. Psychological well-being is often related to physical well-being, so efforts to prevent, minimise, or treat the physical effects of illness and treatment can play an important part in sustaining feelings of integrity, and help patients to adjust in periods of personal upheaval and disturbance. Sexuality and body image

Sharing intimacy and giving pleasure to a partner is a major source of personal value. When diagnosed with cancer, some people do not experience any changes to their sexuality or sex lives, while others may choose this point to cease sexual activity. However, cancer and cancer treatment do sometimes affect frequency of sexual activity, sexual satisfaction, and sexual confidence and body image.94 Anllo suggests that most couples adjust well,95 although relationship difficulties may disproportionately affect women under 50 years. She adds that for women with breast cancer, for example, the diagnosis has a way of bringing pre-existing problems into sharper focus. Communication about the cancer is a common area of difficulty. Some women may find that their partners are uncomfortable with discussions about lingering fears of recurrence; the partners may be protective and afraid to reinforce negative thinking. Brief couples counselling can be useful for this type of problem. Research has shown that couples who have open communication have better marital adjustment following breast cancer [pp.241–242].

In a French survey of 100 people with a variety of cancers, both men and women ranked loss of sexual feeling in their top ten most severe sideeffects. Younger people ranked this side-effect as more severe than older people, and it ranked fourth among married patients and patients who did not live alone.93 Indirect effects of illness such as anorexia, nausea, and vomiting can cause significant changes in appearance, body image, and feelings of wellbeing. Hair loss, pallor, malaise, and lethargy may exacerbate these effects. Emotional and psychological reactions to illness can potentiate fatigue. Understandably, sexual activity may be difficult to sustain for both partners in a relationship. This in itself may further reinforce disruptions to an already threatened body image.96 Society remains uncomfortable with overt expressions of concern about sexual function, but nurses need to be able to discuss this aspect of our lives without being dismissive or getting embarrassed. It helps to be comfortable with the idea of your own sexuality and attitudes towards sex, and counselling skills may help.97 If nurses lack the confidence to participate in discussions about sexuality or the possibility of modifying sex to take account of health care needs, referral to a counsellor or specialist with the appropriate skills should be considered. Worries related to sexual function (for example, the effects of chemotherapy on future pregnancies) also need to be addressed. Advice on contraception during and for some time after chemotherapy should always be given to women of childbearing age, to avoid the possibility of teratogenic effects; the need for sperm banking should be considered for men before the start of chemotherapy. Treatment with chemotherapy does not preclude expressions of physical affection, though familiar activities like kissing can be difficult if, for example, someone is badly affected by stomatitis. Chemotherapy can cause hot flushes, vaginal dryness, amenorrhoea, and painful intercourse (dyspareunia), and may induce an early menopause. It is difficult to predict whether patients will become sterile or not as a result of chemotherapy, though in women the risk appears to be related to age. Perry points out that a proportion of adult men with Hodgkin’s disease or testicular tumours have reduced fertility before

292 The experience of treatment

treatment.1 Older regimens for Hodgkin’s disease cause permanent damage to sperm production in a high proportion of cases, although newer regimens are better tolerated. With treatment for testicular cancer, sperm production often recovers within 1–2 years, although there may be more permanent effects on the motility of sperm and volume of ejaculate.

Side-effects, toxicities, and nursing implications Chemotherapy is a systemic treatment, which can produce a great number and variety of side-effects throughout the body. These effects depend upon the drug or the combination of drugs used, the dose, the schedule of administration, and the route of administration. Perhaps the greatest variable of all, however, is the reaction of individuals given their physical and/or emotional circumstances when they are given chemotherapy. Medical and nursing assessment of patients, and the investigations carried out before starting chemotherapy, have three main objectives: 1. to assess each person’s physical condition, including nutritional status, renal, liver, and cardiac function, bone marrow reserve, and performance status; to resolve problems where possible and to identify anyone at risk of specific short- or long-term toxicities 2. to determine the extent of a person’s cancer to provide a baseline against which to measure response to therapy, for example, using X-rays, scans, or measurement of tumour markers 3. to calculate the correct dose of drug or drugs, avoiding unnecessary risk of toxicity; dosage is often based on body surface area in m2, calculated from height and weight. Assessment and investigations may be repeated at regular intervals to detect at an early stage toxicities that could lead to irreversible damage if not addressed. The information gathered, together with patients’ descriptions of their usual level of function and activity, will assist medical and nursing staff to plan a safer course of chemotherapy, either preventing or minimising physical dis-

comfort and distress. Anticipation of toxicities makes it possible to provide effective prophylaxis in some cases. It is essential to be familiar with protocols in use when taking responsibility for patients receiving chemotherapy or for administering the drugs; in addition to giving details of chemotherapy, protocols contain vital information about prophylactic medications such as antiemetics and antidotes given as part of a particular course of treatment. Assessing the toxicities of anti-cancer chemotherapy in practice requires knowledge of the effect of cytotoxic drugs on the body in general, and familiarity with the effects of the specific drugs or combinations of drugs in use. It is important to observe the onset, severity, and duration of toxicities, to recognise any risk to patients, and to initiate interventions and make prompt referrals to ensure that chemotherapy-related problems are dealt with effectively. The World Health Organization and other bodies such as American National Cancer Institute (see http://ctep.cancer. gov/reporting/ctc.html) have developed systems of common toxicity criteria to facilitate the reporting of toxicities in clinical practice and clinical trials.16 The side-effects of chemotherapy can be divided into three categories according to their time of onset.36 Immediate side-effects (Box 12.1) can be said to occur within 30 minutes of the start of treatment; short-term side-effects (Box 12.2) can be said to occur between 3 and 7 days after therapy begins; and long-term side-effects (Box 12.3), which are often cumulative, can be said to occur after 7 days. Immediate side-effects

Local effects of chemotherapy, which are related to the venepuncture site and the venous pathway, are often transient. It is important to inform patients of what to expect so that they can provide the information nurses and clinicians need to help them to distinguish between events such as local allergic reaction, and extravasation. Doxorubicin and daunorubicin have been associated with a localised hypersensitivity reaction known as a flare reaction. In a flare reaction, urticaria (itching, ‘hives’) can occur at the injection site and along the vein. It may occur only with administration

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Box 12.1 Immediate side-effects of chemotherapy • • • • • • • • • • •

Pain at insertion site Venous pain Cold sensation along the vein Red flush along the vein ‘Nettle’ rash along and adjacent to the vein Facial flushing Bodily flushing Hypotension Hypersensitivity reactions Anaphylaxis Abnormal tastes or smells

Box 12.2 Short-term side-effects of chemotherapy • • • • • • • • • • • • • •

Anorexia Nausea Vomiting Stomatitis Possible recall of radiation skin reactions Pain at tumour site or jaw area Malaise Flu-like syndrome, including fever Chemical cystitis Haematuria Red urine/green urine Constipation Diarrhoea Cold-induced paraesthesia (oxaliplatin)

of the first dose of the drug, or alternatively, on second and subsequent occasions.14 Short-term effects

Anorexia Anorexia, a loss of the desire to eat, is frequently experienced by people with cancer and patients receiving chemotherapy. It can lead to reduced food intake, malnutrition, impaired quality of life, and increased morbidity.98 Anorexia can be secondary to a number of factors, including fatigue, nausea and vomiting, dry mouth, stomatitis, constipation, and alterations in taste and smell. Taste alterations, which can vary in degree, type, and duration, are thought to be caused by the direct

Box 12.3 Long-term and cumulative sideeffects of chemotherapy • Bone marrow depression • Alopecia • Skin reactions, including rashes, inflammation, pigmentation, photosensitivity, palmar plantar syndrome • Nail ridging • Pulmonary fibrosis • Thrombophlebitis • Pulmonary fibrosis • Congestive cardiac failure • Liver dysfunction • Renal toxicity • Sexual dysfunction, including amenorrhoea, sterility, possible chromosomal damage • Neurological problems, including peripheral neuropathy, muscle weakness, high-frequency hearing loss, paralytic ileus, bladder atony • CNS toxicity, including lethargy, fatigue, depression, headaches

effect of chemotherapeutic agents on the taste buds of the tongue, which are replaced every 5–7 days.14 Patients may experience a metallic or bitter taste, and there may be an increased threshold or aversion to sweet food. Within the family, a disinclination to eat or participate in meal times can be seen as a rejection of caring feelings and actions, and may lead to uncomfortable pressures and tensions.99 It is important that patients and their families understand this, and that they are given help to set realistic goals in terms of meeting nutritional requirements. The first step is often nutritional assessment, which includes physical assessment, dietary history, what may have caused the loss of appetite, and specific measures such as weight, intake and expenditure of calories, or skin-fold thickness. It may be necessary to refer patients to a dietician for advice on nutritional supplements and on whether enteral or parenteral feeding is required. Patients and their families and friends should be assisted to maintain an interest in nutrition and the dietary choices available to them, and an awareness of the role of a well-planned diet in sustaining energy levels and physical and emotional well-being. It can be helpful to experiment with flavours, and strongly flavoured sweets to

294 The experience of treatment

mask tastes or smells may make it easier to tolerate the administration of some drugs. Factors that contribute to the enjoyment of food, such as presentation, odour, texture, timing, social setting, and alcoholic drinks, can be discussed and taken into account when planning meals. Measures can be taken to prevent or minimise some of the conditions that impair sensation or perception and affect the intake of food and fluids, including scrupulous oral hygiene, and treatment of dry mouth, stomatitis, nausea, vomiting, and constipation. Alterations in taste are likely to be temporary, and it may help to reassure patients that their liking for favourite foods will return. In the meantime, regular, small meals can be offered, or alternatively, a good meal served at a time when a patient feels particularly able to eat. Diarrhoea Diarrhoea can be defined as an increase in stool volume and liquidity resulting in three or more bowel movements a day.16 It may be accompanied by abdominal cramps and/or flatus. By inhibiting normal cell replication, chemotherapy can disrupt the process of cell replacement and disturb the integrity of the epithelial lining of the bowel, which becomes inflamed and oedematous. The overall size of the absorptive surface becomes smaller as villi and microvilli are flattened and become atrophic;99 intestinal contents pass rapidly through the gut, with a consequent lessening in the absorption of nutrients. The degree and duration of diarrhoea depend on the chemotherapeutic agent in use, the dose, the timing of the nadir (lowest point in the peripheral blood count after chemotherapy), and the frequency of administration.16 5-FU is known to cause diarrhoea, as are actinomycin-D, arsenic trioxide, bortezomib, capecitabine, docetaxel, doxorubicin, gefitnib, irinotecan, and methotrexate. While diarrhoea is a less common complication with methotrexate, therapy must be halted if it occurs, to prevent serious gastrointestinal problems.16 Patients should be assessed to establish their normal bowel habit, ways of managing elimination, and nutritional status. Nutritional status, fluid balance, the frequency and characteristics of the diarrhoea, and the effectiveness of antidiarrhoeal drugs (e.g. loperamide) in relieving

diarrhoea and/or cramps should be frequently monitored. High-calorie, high-protein, lowresidue, soft, bland, easily digested foods (e.g. fish, chicken, pasta, boiled or steamed vegetables) should be provided, and milk, milk products, high-fibre foods, and others that exacerbate diarrhoea avoided. Adequate fluid replacement is essential, as is careful perianal care. Octreotide acetate is suggested as a treatment for excessive diarrhoea following gastrointestinal resection or when chemotherapy-induced diarrhoea is not effectively controlled by other pharmacological interventions.16 Constipation Constipation has been defined as infrequent, excessively hard and dry bowel movements resulting from a decrease in rectal filling or emptying.16 The vinca alkaloids (e.g. vincristine and vinblastine) most commonly cause constipation, secondary to autonomic nerve dysfunction that is manifested as colicky abdominal pain and adynamic ileus.14 Symptoms occur within 3–7 days after drug administration. Constipation is an uncomfortable and distressing side-effect, which can create nutritional problems and result in anal tears, bleeding, and infection. The emphasis should be on prevention rather than treatment. The risk of constipation can be reduced through good knowledge of dietary measures such as adequate fibre and fluid intake, and through regular physical activity. Stool softeners and laxatives can be prescribed in conjunction with chemotherapeutic agents known to cause constipation. Early notification of medical staff when problems are developing, and appropriate use of prescribed medication, can help to prevent the more serious and distressing consequences of this condition. The use of laxatives and/or stool softeners such as lactulose is especially recommended for patients with a history of constipation. Choosing an appropriate medication from the range of enemas, suppositories, stimulants, and softeners available depends on what effect is required. Stomatitis Stomatitis is an acute inflammation of the oral and oropharyngeal mucous membranes, including

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the lips, tongue, gingiva (gums), buccal mucosa, palate, or floor of the mouth. The processes underlying the development of mucositis are complex and involve the interaction of a range of cellular, tissue, and oral factors. In the initial tissue injury phase, the cells of the basal epithelium are damaged. This is followed by the epithelial phase, in which there is epithelial atrophy, and then by the ulcerative/infective phase, and finally the healing phase.100 Mucositis is very disabling and significantly affects quality of life, causing pain and difficulty with eating, drinking, and talking: research suggests that at least 40% and as many as 70% of patients receiving standard chemotherapy treatment will experience mucositis.100,101 Many drugs, in particular bleomycin, doxorubicin, daunorubicin, docetaxel, 5-FU, and methotrexate, are known to induce stomatitis, in addition to high-dose therapy with busulphan, etoposide, melphalan, and thiotepa. The mucosal lining of the mouth consists of non-keratinised squamous epithelium that regenerates every 10–14 days; the first symptoms of stomatitis, including pale, dry mucous membranes, can be seen as early as the third day after administration of the chemotherapeutic agent, and may be accompanied by a burning sensation. Diffuse ulceration may not appear for up to 7 days after treatment is given. A number of factors can influence the frequency and severity of oral complications, including drug type, dosage, nutritional status, oral health prior to treatment, and quality of oral care given during treatment. Younger patients experience stomatitis more frequently than older patients, and the incidence of oral complications is two to three times higher in haematological malignancies than in solid tumours, possibly due to the immunosuppression that characterises haematological cancers. Good oral hygiene appears to reduce the severity of oral mucositis without increasing the risk of infection.16,100 Both the more minor effects of chemotherapy on the mouth (for example, a burning sensation, intolerance to hot, spicy, or acidic foods, inflammation, and changes to saliva production), and the major effects, including sloughing, ulceration, bleeding, and bacterial, fungal, or viral infections, have profound effects on quality of life, and can undermine an individual’s ability

and willingness to tolerate further chemotherapy. Stomatitis can indeed be so severe and painful that eating and drinking become extremely difficult, and it may be necessary to reduce the dose of chemotherapy or to delay subsequent courses. Before the start of chemotherapy a baseline oral assessment is recommended, including a review of the patient’s daily oral care routine. Effective oral hygiene and plaque control, with a soft toothbrush to prevent damage to delicate tissues, should be maintained. Specific nursing interventions depend on the extent of stomatitis, which may range from a potential problem to bleeding, ulceration, and an inability to take food or fluids (sometimes described as grade 4 stomatitis).14 Measures include use of normal saline or antibacterial mouthwashes, and sodium bicarbonate solution or dilute hydrogen peroxide to remove thick secretions or debris.14,16 The mouth should be rinsed with water after using hydrogen peroxide. A soft, bland diet with a smooth consistency is recommended; spicy or acidic foods (and tobacco) should be avoided. Topical analgesics for use before meals are available to control pain and dysphagia.101 Application of emollients or medicated topical applications is often required to prevent cracking and drying of the lips and to treat infections, and antibacterial and antifungal oral suspensions to treat oral infections. In the most severe cases patients will require IV hydration, measures to control pain (which may include a morphine infusion), and on occasions enteral or parenteral feeding. With some drugs (such as 5-FU) cryotherapy may be helpful in preventing stomatitis: patients start sucking ice chips 5 minutes before chemotherapy is given, and continue for 25 minutes afterwards.100 Nausea and vomiting While clinicians often regard suppression of the bone marrow as being the major dose-limiting toxicity of chemotherapy, patients are likely to see nausea and vomiting as the most distressing side-effect:70,102 After the second course, I found that thinking about going there made me vomit, in fact it was almost as

296 The experience of treatment bad as when I was actually having treatment. Even now [2 years later] I start feeling sick when I pass the hospital.103

• Nausea is often experienced as the need to vomit, an unpleasant sensation of impending sickness focused on the stomach. Patients suffering from nausea often appear pale and sweaty; they may have a rapid pulse and feel cold and clammy. • Retching is a rhythmic, often forceful, movement involving the diaphragm and abdominal muscles, which moves stomach contents in and out of the oesophagus. • Vomiting occurs when the contents of the stomach, duodenum, or jejunum are expelled forcefully through the mouth. This is achieved by sudden powerful contractions of the respiratory muscles at the same time as relaxation of the upper oesophageal sphincter. Vomiting is often followed by lethargy and pronounced weakness of the muscles. Chemotherapy-induced nausea and vomiting occurs at a variety of time points relative to the time that treatment was given. Nausea and vomiting occurring within 2 hours of treatment (and lasting up to 24 hours) is referred to as acute; delayed nausea and vomiting develops or persists 24 hours after chemotherapy; anticipatory nausea and vomiting occurs before or during administration as a result of operant conditioning from stimuli associated with chemotherapy.16 Younger Table 12.1

patients tend to experience more nausea and vomiting than older patients.104 Chemotherapeutic agents can be described as having mild, moderate, or severe emetogenic potential, according to the severity of nausea and vomiting with which they are associated (see Table 12.1). Poor prophylaxis or control of nausea and vomiting has the potential to affect quality of life badly, by initiating a number of undesirable consequences, including anticipatory nausea and vomiting, unwillingness to continue with treatment, delays in treatment, dose reduction, dehydration, electrolyte imbalance, anorexia and aversion to food, oesophageal tears, dental erosion, muscular strain, and fatigue. Mechanism of nausea and vomiting. The vomiting reflex in chemotherapy-induced nausea and vomiting is co-ordinated by the vomiting centre (VC) in the medullary reticular formation in the brain. The VC is located close to the chemoreceptor trigger zone (CTZ), which is sensitive to chemicals, drugs, and toxins, including chemotherapeutic agents, and radiation. The vomiting centre is sensitive to stimulation from the CTZ, afferent nerve fibres in the gastrointestinal tract, cerebral cortex, and vestibular apparatus.16,105 Vomiting occurs when the vomiting centre is stimulated from the CTZ or other areas. Dopamine and serotonin receptors are located in the CTZ, and histamine and dopamine receptors in the VC.16 Damage to the mucosa of the small intestine caused by chemotherapy releases sero-

Emetogenicity of common chemotherapeutic agents

Mildly emetogenic

Moderately emetogenic

Highly emetogenic

Etoposide (oral) Mitomycin C Methotrexate Bleomycin Chlorambucil 5-FU (continuous infusion) Melphalan (oral) Vincristine Vinblastine

Carboplatin Daunorubicin Carmustine Lomustine Doxorubicin Dactinomycin Cytarabine Procarbazine Mitoxantrone 5-FU (IV bolus) Etoposide (IV)

Cisplatin Mustine Dacarbazine Cyclophosphamide (IV >1000 mg/m2) Melphalan (IV >100 mg/m2)

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tonin (5-HT3), which stimulates receptors on afferent nerve fibres, which in turn stimulate the vomiting centre. 5-HT3 antagonists (e.g. ondansetron and granisetron) have shown considerable success in preventing and controlling acute nausea and vomiting in patients receiving chemotherapy, but have been less successful in treating delayed nausea and vomiting.14,106 Assessment of nausea and vomiting. Nausea and vomiting are distinct experiences, which are usefully assessed separately, though some studies appear not to distinguish between the two. The experience of nausea affects individuals in different ways, and assessment relies on eliciting patients’ accounts. The word ‘nausea’ is not always understood: ‘feeling sick’ or ‘feeling queasy’ are more commonly used. It is possible to interpret the experience of nausea in terms of dimensions such as frequency, intensity, and duration, which can then be recorded by means of visual analogue scales (10 cm lines marked with a cross to indicate severity) or descriptive ordinal scales (where a choice is given between descriptors such as ‘never’, ‘sometimes’, or ‘frequently’, each of which is allocated a sequential score). However, patients’ own accounts remain a fundamental source of information about nausea and/or vomiting, recorded in specially designed diaries or journals. Using a scale in conjunction with a diary or journal provides a simple means of comparing scores and assessments, though a scale necessarily omits much of the complexity of the experience. Anticipatory nausea and vomiting. Although it occurs less frequently than post-treatment nausea and vomiting, anticipatory nausea and vomiting (ANV) can be just as distressing, and anti-emetic drugs do not appear to control it once it has developed. It is estimated that 25–30% of patients experience anticipatory nausea by their fourth cycle of chemotherapy, and that 8–20% of patients receiving chemotherapy experience anticipatory vomiting.107 ANV has been described as a learned or conditioned response:107,108 neutral stimuli such as the odour or appearance of the treatment room or the sight of the nurse become strongly associated with the chemotherapy. They therefore lose their

‘neutrality’ and become ‘conditioned stimuli’. Responses elicited by conditioned stimuli are known as conditioned responses. Conditioned responses (such as nausea and vomiting) may occur in the presence of conditioned stimuli (for example, the room, smell, or nurse), without the presence of the unconditioned stimulus (the chemotherapy itself ). Nausea and vomiting following chemotherapy are largely determined by the type of chemotherapy received, although other factors such as age ( 7) of the urine. Hyponatraemia occurs in some patients receiving vincristine, and is associated with the peripheral and autonomic neuropathy occurring with this drug. The effect is clinically similar to inappropriate secretion of antidiuretic hormone.1

• Methotrexate is an anti-folate/folate antagonist, which inhibits the enzyme dihydrofolate reductase, depleting the folates (derived from dietary folic acid) necessary for the synthesis of precursors of DNA (thymidylate and purines) and RNA (purines). Methotrexate is used in the treatment of acute lymphoblastic leukaemia, and choriocarcinoma. It is used in combination with other agents in the management of, for example, lymphoma, osteosarcoma, and breast, head and neck, lung, ovary, and bladder cancer. High-dose methotrexate is given in conjunction with folinic acid rescue to prevent excessive toxicity. • Trimetrexate acts in a similar manner to methotrexate to inhibit DNA synthesis. It is active against malignant mesothelioma, and colorectal and bladder cancer. • Raltitrexed directly inhibits the activity of the enzyme thymidylate synthase. In Europe, it is used in single-agent treatment for advanced colorectal carcinoma. • 5-Fluorouracil (5-FU) interferes with RNA synthesis and function. It has been used in the management of cancers of the breast, head and neck, gastrointestinal tract, bladder, cervix, and vulva. • Capecitabine is an oral anti-cancer agent converted by the liver into 5-FU. It is used in the treatment of breast cancer that is resistant to paclitaxel and anthracycline-containing regimens.1 • Cytarabine. When activated, the anti-metabolite cytosine arabinoside (ara-C) is a potent inhibitor of DNA synthesis. To enable this sequence of events to take place, it is likely that cells must be exposed to ara-C during the S phase of the cell cycle (i.e. inhibition of DNA must continue for at least one complete cell cycle).2 Administration schedules must be tailored to achieve this result: typically, ara-C is administered by bolus dose every 12 hours for 5–7 days, or by continuous infusion for

Common anti-cancer agents Anti-cancer agents can be classified according to their mechanism of action. The anti-metabolites

The anti-metabolites disrupt DNA synthesis, and are most active during the S phase of the cell cycle.

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•

• •

•

•

7 days.2 Ara-C is used in the treatment of acute myelocytic leukaemia, and is a particularly important factor in the induction of remission. Gemcitabine inhibits DNA replication and repair. It is used in the treatment of locally advanced or metastatic non-small-cell lung cancer.18 Fludarabine acts in a similar way to ara-C. Uses include chronic lymphocytic leukaemia and low-grade Hodgkin’s lymphoma.1 Hydroxyurea acts upon an enzyme (ribonucleoside diphosphate reductase) essential to the synthesis of DNA. It is cell cycle specific, acting upon cells in the S phase of the cycle. Hydroxyurea has been used as an anti-cancer treatment for a wide variety of tumours, including melanoma, chronic myeloid leukaemia, and ovarian, prostate, and head and neck cancer. The anti-metabolites 6-mercaptopurine and 6thioguanine inhibit the action of enzymes required for the synthesis of DNA, and cause critical alterations in the synthesis of RNA.2 Mercaptopurine is used in the treatment of acute lymphocytic leukaemia, and thioguanine in combination therapy for acute myeloid leukaemia.1 Deoxycoformycin (pentostatin) disrupts DNA synthesis, replication and repair. It is used in the treatment of chronic lymphoid malignancies such as hairy cell leukaemia.10

Vinca alkaloids

Together with another vinca alkaloid, vinblastine, vincristine is derived from the pink periwinkle plant (Catharanthus roseus). Vindesine, a semisynthetic derivative of vinblastine, has primarily investigational rather than therapeutic applications. The vinca alkaloids are cell-cycle-specific and have an anti-mitotic effect, blocking cells in mitosis. The microtubules of the mitotic apparatus (which are essential to the formation of the ‘mitotic spindle’) are disrupted, and cell division is arrested; chromosomes are free to disperse (‘exploded mitosis’) or clump within the cytoplasm.2 Vincristine is used in the treatment of childhood and adult acute lymphocytic leukaemias, lymphomas, and a range of solid tumours includ-

ing Wilms’ tumour, Ewing’s sarcoma, and rhabdomyosarcoma.1 Vinblastine is used in combination with other agents in the treatment of metastatic testicular tumours. Vinorelbine, a semi-synthetic derivative of vinblastine, is active against non-small-cell lung cancer and breast cancer, though its applications are still under evalauation.1 Taxanes: paclitaxel (taxol) and docetaxel (taxotere)

Paclitaxel was originally produced from the bark of the Pacific yew tree in 1971 but can now be produced semi-synthetically from products of the European yew. Docetaxel is synthesised from the same source materials. Taxanes disrupt many cellular activities by inducing abnormal stability in the microtubules, causing cells to arrest in mitosis. Paclitaxel and docetaxel have a wide range of applications, and are widely used in the treatment of metastatic cancer of the ovary, breast, lung, and head and neck.2 The alkylating agents

The alkylating agents disrupt DNA synthesis and cell division. They include: cyclophosphamide, ifosfamide, melphalan, and chlorambucil (nitrogen mustards); carmustine (BCNU) and streptozocin (nitrosureas); dacarbazine (DTIC) and temozolomide (triazenes); thiotepa, busulphan, and procarbazine. • Cyclophosphamide is the most widely used of the alkylating agents. Following metabolic activation after administration, cyclophosphamide severely disrupts DNA molecules during the synthesis phase of the cell cycle. It is used in the management of lymphomas, chronic leukaemias and carcinomas (e.g. in combination with methotrexate or doxorubicin and 5-FU as adjuvant therapy for carcinoma of the breast). • Ifosfamide is an analogue of cyclophosphamide. When metabolised, both agents produce alkylating compounds that destroy DNA. Ifosfamide is used in combination with other agents in the treatment of germ cell testicular cancer, as well as adult and childhood sarcomas.2 Because ifosfamide causes urotoxicity, a ‘uroprotector’

308 The experience of treatment

(MESNA) is administered concurrently during therapy. • Chlorambucil is used in the treatment of chronic lymphocytic leukaemia; in combination with other agents, melphalan is used in regimens for multiple myeloma. • Carmustine (BCNU) is a nitrosurea, which alkylates DNA and produces DNA–DNA and DNA–protein cross-links.10 It is used with procarbazine in the treatment of malignant gliomas.2 Chabner and Longo10 note that: Currently, BCNU is used with HCT regimens for haematopoietic diseases. As predicted from the animal studies, the nitrosureas have shown significant activity against brain tumours. When used as an adjuvant to radiation therapy, they enhance survival modestly in patients with grade III and IV astrocytomas. The severe haematopoietic depression (especially thrombocytopaenia) and pulmonary toxicity produced by these agents are significant limiting factors in their use [p.287].

• Streptozocin is an alkylating agent that is a naturally occurring antibiotic methylnitrosurea derived from Streptomyces. Uses include treatment for carcinomas of islet cells in the pancreas. • Thiotepa is one of a group of drugs thought to produce alkylation in a similar way to the nitrogen mustards. It has been used in the treatment of carcinoma of the bladder, breast, and ovary.18 • Busulphan is an alkylating agent that disrupts DNA synthesis and cell division. Before the introduction of imatinib, busulphan was used in the treatment of chronic myelogenous leukaemia;1,2 it is used in high-dose regimens with cyclophosphamide prior to bone marrow transplantation.2 • Dacarbazine is a methylating agent that is metabolically activated in the liver following administration, and is active in all phases of the cell cycle. It has been used in the treatment of malignant melanoma, soft tissue sarcomas, and Hodgkin’s disease. • Temozolomide, like dacarbazine, kills cells in all phases of the cell cycle, and has demonstrated activity in recurrent and progressive high-grade gliomas.2,10

Other agents

Other agents that damage the DNA template through a variety of mechanisms include cisplatin and carboplatin (platinum analogues); doxorubicin, daunorubicin, mitoxantrone, idarubicin, epirubicin, and bleomycin (anti-tumour antibiotics); etoposide and teniposide (podophyllotoxins); dactinomycin and mithramycin (block RNA synthesis). • The ‘platinum co-ordination complexes’ were first identified as potential anti-proliferative agents in 1965 by Rosenberg and co-workers. They observed that a current delivered between platinum electrodes produced inhibition of E. coli proliferation . . . (cisplatin) was the most active of these substances in experimental tumour systems and has proven to be of great clinical value . . . Carboplatin was approved for treatment of ovarian cancers in 1989, and oxaliplatin was approved by the FDA [Food and Drug Administration] for colon cancer in 2003 . . . As a group, these agents have broad neoplastic activity, and have become the foundations for treatment of testicular cancer, ovarian cancer, and cancers of the head and neck, bladder, oesophagus, lung, and colon [p.1332].2

• Doxorubicin is an anti-tumour antibiotic derived from the fungus Streptomyces. Its cytotoxic activity may result from an ability to cause breaks in strands of DNA. Perry1 summarises the mechanisms of action of various anti-tumour antibiotics as follows: The focal point for the cytotoxicities of antitumour antibiotics is DNA . . . antibiotics can intercalate [i.e. bind] in between base pairs of DNA (doxorubicin, daunorubicin, dactinomycin, bleomycin), bind to DNA (mitomycin C, plicamycin) and generate toxic oxygen free radicals, which cause single- or doublestranded DNA breaks (doxorubicin, daunorubicin, idarubicin, bleomycin, mitomycin C). From this . . . DNA damage come some of the . . . cytotoxic actions of these agents, such as inhibition of DNA-directed RNA synthesis, protein synthesis . . . [p.229].

Doxorubicin is used in treatment of acute leukaemia, lymphomas, carcinoma of the breast and ovary, small-cell carcinoma of the lung, osteogenic and soft tissue sarcomas, and breast and lung carcinomas.18

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• Daunorubicin is primarily used in the treatment of acute non-lymphocytic and acute lymphocytic leukaemias.1 It has largely been replaced by idarubicin.2 • Bleomycin is an anti-tumour antibiotic originally produced by fermentation of Streptomyces verticullus. It is most commonly used in combination with other agents in the treatment of lymphomas,1 and is effective in therapy for germ cell tumours of the testis and ovary.2 • Mitoxantrone is an anti-tumour antibiotic, which inhibits DNA and RNA synthesis. It has shown anti-cancer activity in acute leukaemias, breast cancer, and lymphomas.1 • The anti-tumour antibiotic Dactinomycin (actinomycin D) is primarily used in the management of childhood rhabdomyosarcoma and Wilms’ tumour. • Mitomycin C is an anti-tumour antibiotic derived from Streptomyces. Mitomycin C has been used in the treatment of carcinoma of the anus, bladder, breast, cervix, head and neck, lung, and stomach. Brunton et al. note that mitomycin has been replaced by less toxic and more effective agents in anal, colorectal, and lung cancers.2 • Together with teniposide, etoposide is derived from podophyllotoxin taken from the mandrake plant (Podophyllum peltatum). Etoposide and teniposide cause irreparable DNA breaks, which lead to cell death. Etoposide is most commonly used in the management of testicular cancer (with bleomycin and cisplatin) and small-cell carcinoma of the lung (with cisplatin and ifosfamide).2 Other uses include treatment of nonHodgkin’s lymphomas, acute non-lymphocytic leukaemia, and Kaposi’s sarcoma in AIDS. Teniposide is used in the management of acute lymphoblastic leukaemia in children, and acute monocytic leukaemia in infants.

•

•

• •

Hormones

These include oestrogens, progestins, anti-oestrogens, and aromatase inhibitors. • Oestrogens are useful in the treatment of metastatic breast cancer and prostate cancer. When a tumour is oestrogen-receptor positive, a response rate of about 60% can be achieved in

•

metastatic breast cancer.13 The most commonly used oestrogen in metastatic breast cancer is DES (diethylstilbestrol), although its toxicity means that its use in breast cancer use is generally limited to second- or third-line therapy, after anti-oestrogens, progestins, and aromatase inhibitors.1 Toxicities associated with DES in prostate cancer have affected the extent of its use. Progestins (e.g. megestrol acetate and medroxyprogesterone) have been used in breast and endometrial cancers. Toxicities associated with their use have led to their relegation to use as third-line therapies in breast cancer, following tamoxifen and aromatase inhibitors. Anti-oestrogens (e.g. tamoxifen) inhibit the action of oestrogen and are cytostatic rather than cytotoxic. Tamoxifen is used in post-menopausal women with advanced breast cancer, and as adjuvant therapy in all women with stage I or II oestrogen-receptor-positive breast cancer, to increase disease-free and overall survival. Anti-androgens (e.g. flutamide, nilutamide, bicalutamide) are used in combination therapy for carcinoma of the prostate. Aromatase inhibitors (e.g. aminoglutethamide, anastrozole/Arimidex, letrozole/Femara, exemestane/Aromasin) affect the function of the enzyme aromatase, leading to oestrogen deprivation.2 Aminoglutethamide causes suppression of the adrenal gland and inhibits production of oestrogens and androgens. It has been used in the treatment of metastatic cancer of the prostate and breast. Patients receiving aminoglutethamide require corticosteroid supplements to avoid the symptoms of adrenal suppression. More modern aromatase inhibitors such as anastrozole, letrozole, and exemestane are more selective, and have an important role in the treatment of women with metastatic, oestrogen-dependent breast cancer, whose disease has progressed on tamoxifen. Corticosteroids (or adrenocorticoids) ‘modulate DNA synthesis, mitosis, cell growth, differentiation, and . . . metabolism in normal and neoplastic target tissues’ (p.313).1 They are used in combination with other agents in the primary treatment of acute and chronic lymphocytic leukaemia, multiple myeloma, and Hodgkin’s

310 The experience of treatment

and non-Hodgkin’s lymphoma. Corticosteroids are also frequently used in anti-emetic therapy, as well as in the management of hypercalcaemia, the palliation of bone pain, to reduce cerebral oedema, and to alleviate breathlessness (e.g. in lymphangitis carcinomatosa). Biological response modifiers

Biological response modifiers include interferons, interleukins, and monoclonal antibodies. • The interferons, α- (alpha-), β- (beta-), and γ(gamma-), were originally derived from leucocytes, fibroblasts, and T-cell lymphocytes, respectively; they cause inhibition of protein, DNA, and RNA synthesis. Perry notes that interferons activate natural killer (NK) and cytotoxic T-cells, in addition to their direct antiproliferative activity.1 Interferon-α is an important treatment for metastatic renal cell carcinoma, hairy cell leukaemia, and chronic myeloid (or myelogenous) leukaemia. It has also been used in the treatment of multiple myeloma. • Interleukin-2 has been most widely tested as a potential anti-tumour agent. Interleukins are, like interferons, produced by leucocytes. Interleukin-2 is derived from peripheral T-helper lymphocytes. Interleukin-2 stimulates immune responses, including cytotoxic T-cells, natural killer cells, other interleukins, and γ-interferon. Interleukin-2 has been used in the treatment of metastatic renal cell carcinoma and metastatic melanoma. • Rituximab is a monoclonal antibody that attaches itself to CD-20 proteins on the surface of B-cell lymphocytes, stimulating the immune system to attack the targeted cells, and also, possibly, inducing cell cycle arrest or apoptosis. It is used in the treatment of B-cell nonHodgkin’s lymphoma. • Trastuzumab (Herceptin) is a monoclonal antibody that attaches itself to HER2 proteins found on the surface of some breast cancer cells, preventing cell division. Around 20–30% of invasive breast carcinomas over-express the HER2 receptor.2 Trastuzumab with paclitaxel is used in the treatment of metastatic breast cancer in women who over-express HER2. Trastuzumab has also been used in conjunction

Research study 12.3 Mitchell T. (2007). The social and emotional toll of chemotherapy – patients’ perspectives. European Journal of Cancer Care 16, 39–47.89 Mitchell presents the findings of a qualitative study, a key aim of which was to ‘illuminate patients’ journeys through the process of receiving chemotherapy treatment for cancer’ (p.2). Participants were 19 men and women aged ≥18 years recruited from a pre-chemotherapy clinic, and the objective was to interview them at each time they received chemotherapy. Nine researchers conducted a total of 98 interviews, and met with participants on up to ten occasions. In addition to the interviews, participants were given the opportunity to keep written or audio diaries. Data from the study were analysed by generating common themes and categories. As a result, eight main themes were identified, including ‘striving for normality’, ‘the role of significant others’, ‘feeling up, feeling down’, and ‘flagging’. Mitchell comments that Receiving chemotherapy appears to cause disruption in all dimensions of life, and the need to regain control, equilibrium, consistency and stability was paramount to feeling well again [p.4]. Participants provided some very vivid observations on the ups and downs of their experience. For example: I’m 42 today and part of me is gloomy that I’m most unlikely to reach 43 [p.6]. I’m struggling to survive [p.6]. I’ve lost my bubbly self [p.6]. The problem of sleeplessness is highlighted under the theme ‘flagging’, as are various manifestations of loss of concentration or feeling muddled: Mentally flagging – brain in low gear, can’t think or retain thoughts [p.7]. I feel cuckoo [p.7]. My husband says I repeat myself over and over again [p.7]. Mitchell concludes that by using qualitative methods, including ‘conversation-style interviews’ (p.8), the study was able to reflect the private experiences of people undergoing chemotherapy, and that the insight into psychosocial issues it provides will assist nurses to reshape chemotherapy services to ‘improve the experience of living with cancer’ (p.8).

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with other agents in early breast cancer to reduce the risk of recurrence. Recently, the National Institute for Health and Clinical Excellence (NICE) in the UK recommended that all women with early breast cancer should have HER2 testing. Women with primary invasive breast cancer who are HER2 positive, who meet a range of other clinical criteria and in whom certain contraindications are absent, should now be considered eligible for treatment with trastuzumab.149

9. 10.

11.

12.

Bacille Calmette-Guérin

13.

BCG is derived from the live bacterium Mycobacterium bovis. BCG is administered intravesically to delay tumour progression and improve survival in patients with superficial bladder cancer.

14.

L-Asparaginase

Asparaginase is an enzyme that can be isolated from many animal tissues, bacteria (including Escherichia coli), plants and the serum of some rodents. Asparaginase deprives leukaemia cells of asparagine, causing destruction of DNA and cell death; the cell cycle is arrested in G1 phase.150 It is used in combination with other agents in the treatment of acute lymphoblastic leukaemia.

References 1. Perry M.C. (ed.) (2001). The Chemotherapy Source Book. Philadelphia, PA: Lippincott Williams and Wilkins. 2. Brunton L.L., Lazo J.S. and Parker K.L. (eds.) (2006). Goodman & Gilman’s The Pharmacological Basis of Therapeutics, 11th edition. New York: McGraw Hill. 3. Bleiberg H., Rougier P. and Wilke H.-J. (1998). Management of Colorectal Cancer. London: Martin Dunitz. 4. Priestman T.J. (1989). Cancer Chemotherapy: An Introduction, 3rd edition. London: Springer. 5. Skeel R.T. (2003). Handbook of Cancer Chemotherapy. Philadelphia: Lippincott Williams and Wilkins. 6. Horwich A. (ed.) (1995). Oncology: A Multidisciplinary Textbook. London: Chapman and Hall Medical. 7. Karnofsky D.A. and Burchenal J.H. (1949). The clinical evaluation of chemotherapeutic agents in cancer. In McLeod C.M. (ed.) Evaluation of Chemotherapeutic Agents. New York: Columbia University Press. 8. Fretwell D.F. (1990). Comprehensive functional assessment (CFA) in everyday practice. In Hazzard W.R., Andres R., Bierman E.L. and Blass J.P. (eds.)

15.

16.

17.

18. 19.

20.

21.

22.

23. 24.

Principles of Geriatric Medicine and Gerontology. New York: McGraw Hill. Mendelsohn M.L. (1960). The growth fraction: a new concept applied to tumors. Science 132, 1496. Chabner B.A. and Longo D.L. (2006). Cancer Chemotherapy and Biotherapy: Principles and Practice. Philadelphia, PA: Lippincott-Raven. Schabel F.M. Jr (1969). The use of tumor growth kinetics in planning ‘curative’ chemotherapy of advanced solid tumours. Cancer Research 29, 2384. Pratt W.B., Ruddon R.W., Ensminger W.D. and Maybaum J. (1994). The Anticancer Drugs. New York: Oxford University Press. Laurence D.R., Bennett P.N. and Brown M.J. (1997). Clinical Pharmacology. New York: Churchill Livingstone. Barton Burke M., Wilkes G.M. and Ingwersen K. (1996). Cancer Chemotherapy: A Nursing Process Approach. Sudbury, MA: Jones and Bartlett. Batchelor D. (2001). Hair and cancer chemotherapy – consequences and nursing care: a literature study. European Journal of Cancer Care 10, 147–163. Camp Sorrell D. (2005). Chemotherapy toxicities and management. In Yarbro C.H., Frogge M.H. and Goodman M. (eds.) Cancer Nursing: Principles and Practice. Sudbury, MA: Jones and Bartlett Publishers. Scurr M., Judson I. and Root T. (2005). Combination chemotherapy and chemotherapy principles. In Brighton D. and Wood M. (eds.) The Royal Marsden Hospital Handbook of Cancer Chemotherapy. Edinburgh: Elsevier Churchill Livingstone. Allwood M., Stanley A. and Wright P. (2002). The Cytotoxics Handbook. Oxford: Radcliffe Medical Press. Hayden B.K. and Goodman M. (2005). Chemotherapy: principles of administration. In Yarbro C.H., Frogge M.H. and Goodman M. (eds.) Cancer Nursing: Principles and Practice. Sudbury, MA: Jones and Bartlett Publishers. Cox K. (2000). Enhancing cancer clinical trial management: recommendations from a qualitative study of trial participants’ experiences. Psycho-oncology 9, 314–322. Cox K. (2002). The hopes of the dying: examining patients’ experience of participation in early phase cancer clinical trials. NTResearch 7, 60–73. Cox K. (2003). Assessing the quality of life of patients in phase I and II anti-cancer drug trials: interviews versus questionnaires. Social Science and Medicine 56, 921–934. Gillon R. (1986). Philosophical Medical Ethics. Chichester: John Wiley. Thompson I.E., Melia K.M. and Boyd K.M. (2000). Nursing Ethics. Edinburgh: Churchill Livingstone.

312 The experience of treatment 25. Jefferies S. (2005). Ethical and legal issues. In Brighton D. and Wood M. (eds.) The Royal Marsden Hospital Handbook of Cancer Chemotherapy. Edinburgh: Elsevier Churchill Livingstone. 26. Department of Health. Consent. www.dh.gov.uk/ PolicyAndGuidance/HealthAndSocialCareTopics/ Consent/fs/en (accessed 30 July 2007). 27. Dougherty L. and Lister S. (2004). Drug administration: cytotoxic drugs. In Dougherty L. and Lister S. (eds.) The Royal Marsder Hospital Manual of Clinical Nursing Procedures, 6th edition. Oxford: Blackwell Publishing, pp. 228–258. 28. Saffran L., Ost D.E., Fein A.M. and Schiff M.J. (2000). Outpatient pleurodesis of malignant pleural effusions using a small-bore pigtail catheter. Chest 118, 417– 421. 29. Tsang V., Fernando H.C. and Goldstraw P. (1990). Pleuroperitoneal shunt for recurrent malignant pleural effusions. Thorax 45, 369–372. 30. Sterman D.H., Kaiser L.R. and Albelda S.M. (1999). Advances in the treatment of malignant pleural mesothelioma. Chest 116, 504–520. 31. Department of Health. (2003). HSC 2003/010 – Updated National Guidance on the Safe Administration of Intrathecal Chemotherapy. www.dh.gov.uk/ PublicationsAndStatistics/LettersAndCirculars/ HealthServiceCircularsArticle/fs/en?CONTENT_ID =4064931&chk = JA/pnL (accessed 30 July 2007). 32. Dougherty L. (2005). Intravenous management. In Brighton D. and Wood M. (eds.) The Royal Marsden Hospital Handbook of Cancer Chemotherapy. Edinburgh: Elsevier Churchill Livingstone. 33. Otto S.E. (1995). Advanced concepts in chemotherapy drug delivery: regional therapy. Journal of Intravenous Nursing 18, 170–176. 34. Faithfull S. and Deery P. (2004). Implementation of capecitabine (Xeloda®) into a cancer centre: UK experience. European Journal of Oncology Nursing 8, S54–S62. 35. Coward M. and Coley H.M. (2006). Chemotherapy. In Kearney N. and Richardson A. (eds.) Nursing Patients with Cancer: Principles and Practice. Edinburgh: Elsevier Churchill Livingstone. 36. Dougherty L. and Lamb J. (1999). Intravenous Therapy in Nursing Practice. Edinburgh: Churchill Livingstone. 37. McClure H.A. (2002). Hickman central venous catheters. Current Anaesthesia and Critical Care 13, 159–167. 38. Dougherty L., Viner C. and Young J. (1998). Establishing ambulatory chemotherapy at home. Professional Nurse 13, 356–358. 39. Gabriel J. (1996). Peripherally inserted central catheters: expanding UK nurses’ practice. British Journal of Nursing 5, 71–74.

40. Macrae K. (1998). Hand-held Dopplers in central catheter insertion. Professional Nurse 14, 99–102. 41. Weinstein S.M. (2007). Plumer’s Principles and Practice of Intravenous Therapy. Philadelphia, PA: Lippincott. 42. Boland A., Haycox A., Bagust A. and Fitzsimmons L. (2003). A randomised controlled trial to evaluate the clinical and cost effectiveness of Hickman line insertions in adult cancer patients by nurses. Health Technology Assessment 7(36). www.hta.ac.uk/project/1068. asp (accessed 30 July 2007). 43. Thompson A.M., Kidd E., McKenzie M., Parker A.C. and Nixon S.J. (1989). Long term central venous access: the patient’s view. Intensive Therapy and Clinical Monitoring 10, 142–145. 44. Kreis H., Loehberg C.R., Lux M.P. et al. (2006). Patients’ attitudes to totally implantable venous access port systems for gynaecological or breast malignancies. European Journal of Surgical Oncology 33, 39–43. 45. Lokich J., Bothe A. Jr, Fine N. and Perri J. (1982). The delivery of cancer chemotherapy by constant venous infusion: ambulatory management of venous access and portable pump. Cancer 50, 2731–2735. 46. Kelly D., Pearce S., Butters E., Stevens W. and Layzelle S. (2004). Achieving change in the NHS: a study to explore the feasibility of a home-based cancer chemotherapy service. International Journal of Nursing Studies 41, 215–224. 47. Wood M., Hyde L. and Salter M. (2005). Management of the adult patient with cancer receiving chemotherapy. In Brighton D. and Wood M. (eds.) The Royal Marsden Hospital Handbook of Cancer Chemotherapy. Edinburgh: Elsevier Churchill Livingstone. 48. Turner C. and Pateman B. (2000). A study of district nurses’ experiences of continuous ambulatory chemotherapy. British Journal of Community Nursing 5, 396–399. 49. Schulmeister L. (1992). An overview of continuous infusion chemotherapy. Journal of Intravenous Nursing 15, 315–321. 50. Teich C.J. and Raia K. (1984). Teaching strategies for an ambulatory chemotherapy program. Oncology Nursing Forum 11, 24–28. 51. Nanninga A.G., de Vries E.G., Willemse P.H. et al. (1991). Continuous infusion of chemotherapy on an outpatient basis via a totally implanted venous access port. European Journal of Cancer 27, 147–149. 52. Koeppen M.A. and Caspars S.M. (1994). Problems identified with home infusion pumps. Journal of Intravenous Nursing 17, 151–156. 53. Hayward T. (2002). Setting up a chemotherapy service at home. Cancer Nursing practice 1, 22–25. 54. Garvey E. and Kramer R. (1983). Improving cancer patients’ adjustment to infusion chemotherapy:

Chemotherapy 313

55.

56.

57.

58.

59.

60. 61.

62.

63. 64.

65.

66.

67.

68.

evaluation of a patient education program. Cancer Nursing 6, 373–378. Fernsler J.I. and Cannon C.A. (1991). The whys of patient education. Seminars in Oncology Nursing 7, 79–86. Dodd M.J. and Miaskowski C. (2000). The Pro-Self program: a self-care intervention program for patients receiving cancer treatment. Seminars in Oncology Nursing 16, 300–308. Butler M.C. (1984). Families’ response to chemotherapy by an ambulatory infusion pump. Nursing Clinics of North America 19, 139–143. Department of Health. (2000). The NHS Cancer Plan: a Plan for Investment, a Plan for Reform. London: Department of Health. Available online at: www. dh.gov.uk/assetRoot/04/01/45/13/04014513.pdf (accessed 30 July 2007). Department of Health. (2003). The NHS Cancer Plan: Three Year Progress Report – Maintaining the Momentum. London: Department of Health. www.dh.gov. uk/assetRoot/04/06/64/40/04066440.pdf (accessed 30 July 2007). Steele S. (2002). A team approach to palliative chemotherapy. Cancer Nursing Practice 1, 22–26. Fallowfield L. (2001). Participation of patients in decisions about treatment for cancer. British Medical Journal 323, 1144. Valanis B.G., Vollmer W.M., Labuhn K.T. and Glass A.G. (1993). Acute symptoms associated with antineoplastic drug handling among nurses. Cancer Nursing 16, 288–295. Health and Safety at Work Act (1974). London: HMSO. Health and Safety Executive. (2005). What you Need to Know about the Control of Substances Hazardous to Health Regulations 2002 (COSHH). London: Health and Safety Executive. Laidlaw J.L., Connor T.H., Theiss J.C., Anderson R.W. and Matney T.S. (1984). Permeability of latex and polyvinyl chloride gloves to 20 antineoplastic drugs. American Journal of Hospital Pharmacy 41, 2618–2623. Goodman I. (1998). Development of national, evidence-based clinical guidelines for the administration of cytotoxic chemotherapy. European Journal of Oncology Nursing 2, 43–50. Baker E.S. and Connor T.H. (1996). Monitoring occupational exposure to cancer chemotherapy drugs. American Journal of Health Systems and Pharmacy 53, 2713–2723. Nieweg R.M., de Boer M., Dubbleman R.C. et al. (1994). Safe handling of antineoplastic drugs: results of a survey. Cancer Nursing 17, 501–511.

69. Schrijvers D.L. (2003). Extravasation: a dreaded complication of chemotherapy. Annals of Oncology 14(suppl. 3), iii26–iii30. 70. Boyle, D.M. and Engelking C. (1995). Vesicant extravasation: myths and realities. Oncology Nursing Forum 22, 57–67. 71. Griffin A.M., Butow P.N., Coates A.S. et al. (1993). On the receiving end V: patient perceptions of the side effects of cancer chemotherapy in 1993. Annals of Oncology 7, 189–195. 72. Cohn K.H. (1982). Chemotherapy from an insider’s perspective. Lancet i, 1006–1009. 73. Price B. (1992). Living with altered body image: the cancer experience. British Journal of Nursing 1, 641– 642, 644–645. 74. Kaplan M. (1983). Viewpoint: the cancer patient . . . being hospitalised on a cancer floor. Cancer Nursing 6, 103–107. 75. Dougherty L. (1994). A Study to Discover How Cancer Patients Perceive the Intravenous Cannulation Experience. MSc thesis, University of Surrey. 76. Buckalew P.G. (1982). On the opposite side of the bed: a nurse clinician’s experiences with anxiety during chemotherapy. Cancer Nursing 5, 435–439. 77. Kaberry S. (1991). Blood simple? Nursing Times 87, 56. 78. Messina S.M. (1989). The nurse with a central line: when the patient is you. Journal of Intravenous Nursing 12, 29–30. 79. Mills R.T. and Krantz D.S. (1979). Information, choice, and reactions to stress: a field experiment in a blood bank with laboratory analogue. Journal of Personality and Social Psychology 37, 608–620. 80. Richardson, A. (1992). Studies exploring self-care for the person coping with cancer treatment: an overview. International Journal of Nursing Studies 29, 191–204. 81. Hudek J. (1986). Compliance in intravenous therapy. CINA: Official Journal of the Canadian Intravenous Nurses Association 2, 7–8. 82. Kelly M.P. (1985). Loss and grief reactions as responses to surgery. Journal of Advanced Nursing 10, 517–525. 83. DiGiacomo S.M. (1987). Biomedicine as a cultural system: an anthropologist in the kingdom of the sick. In Baer H.A. (ed.) Encounters with Biomedicine. New York: Gordon & Breach. 84. Coughlan A.M., Badura A.S., Fleischer T.D. and Guck T.P. (2000). Multidisciplinary treatment of chronic pain patients: its efficacy in changing patient locus of control. Archives of Physical and Medical Rehabilitation 81, 739–740. 85. Gill K.M. (1984). Coping effectively with invasive medical procedures: a descriptive model. Clinical Psychology Review 4, 339–362.

314 The experience of treatment 86. Cowley L., Heyman B., Stanton M. and Milner S.J. (2000). How women receiving adjuvant chemotherapy for breast cancer cope with their treatment: a risk management perspective. Journal of Advanced Nursing 31, 314–321. 87. Feigin R., Greenberg A., Ras H. et al. (2000). The psychological experience of women treated for breast cancer by high-dose chemotherapy supported by autologous stem cell transplant: a qualitative analysis of support groups. Psycho-oncology 9, 57–68. 88. Charmaz K. (1983). Loss of self: a fundamental form of suffering in the chronically ill. Sociology of Health and Illness 5, 168–195. 89. Mitchell T. (2007). The social and emotional toll of chemotherapy – patients’ perspectives. European Journal of Cancer Care 16, 39–47. 90. Holmes S. and Dickerson J. (1987). The quality of life: design and evaluation of a self-assessment instrument for use with cancer patients. International Journal of Nursing Studies 24, 15–24. 91. Carver C.S. and Antoni M.H. (2004). Finding benefit in breast cancer during the year after diagnosis predicts better adjustment 5 to 8 years after diagnosis. Health Psychology, 23, 595–598. 92. Holland K.D. and Holahan C.K. (2003). The relation of social support and coping to positive adaptation to breast cancer. Psychology and Health 18, 15–29. 93. Weiss T. (2004). Correlates of posttraumatic growth in married breast cancer survivors. Journal of Social and Clinical Psychology 23, 733–746. 94. Lamb M.A. (1985). Sexual dysfunction in the gynaecologic oncology patient. Seminars in Oncology Nursing 1, 9–17. 95. Anllo L.M. (2000). Sexual life after breast cancer. Journal of Sex and Marital Therapy 26, 241–248. 96. Holmes S. (1990). Cancer Chemotherapy. London: Austen Cornish. 97. Yates A. (1987). Sexual healing. Nursing Times 83, 20–30. 98. Wilcock A. (2006). Anorexia: a taste of things to come? Palliative Medicine 20, 43–45. 99. Holmes S. (1987). Nutritional problems in the cancer patient. Nursing 3, 733–735, 737–738. 100. Scully C., Epstein J. and Sonis S. (2003). Oral mucositis: a challenging complication of radiotherapy, chemotherapy, and radiochemotherapy: Part 1, pathogenesis and prophylaxis of mucositis. Head and Neck 25, 1057–1070. 101. Scully C., Epstein J. and Sonis S. (2004). Oral mucositis: a challenging complication of radiotherapy, chemotherapy, and radiochemotherapy. Part 2: diagnosis and management of mucositis. Head and Neck 26, 77–84.

102. Colbourne L. (1995). Patients’ experiences of chemotherapy treatment. Professional Nurse 10, 439–442. 103. Fallowfield L. and Clark A. (1991). Breast Cancer. London: Routledge. 104. Dodd M.J., Onishi K., Dibble S.L. and Larson P. (1996). Differences in nausea, vomiting and retching between younger and older outpatients receiving cancer chemotherapy. Cancer Nursing 19, 155–161. 105. Perry M.C. and Yarbro J.W. (eds.) (1984). Toxicity of Chemotherapy. Orlando: Grune and Stratton. 106. Roscoe J.A., Morrow G.R., Hickok J.T. and Stern R.M. (2000). Nausea and vomiting remain a significant clinical problem: trends over time in controlling chemotherapy-induced nausea and vomiting in 1413 patients treated in community clinical practices. Journal of Pain and Symptom Management 20, 113– 121. 107. Hickok J.T., Roscoe J.A. and Morrow G.R. (2001). The role of patients’ expectations in the development of anticipatory nausea related to chemotherapy for cancer. Journal of Pain and Symptom Management 22, 843–850. 108. Pratt A., Lazar R.M., Penman D. and Holland J.C. (1984). Psychological parameters of chemotherapyinduced conditioned nausea and vomiting: a review. Cancer Nursing 7, 483–490. 109. Redd W.H., Montgomery G.H. and DuHamel K.N. (2001). Behavioral intervention for cancer treatment side-effects. Journal of the National Cancer Institute 93, 810–823. 110. Morrow G.R. and Morrell C. (1982). Behavioural treatment for the anticipatory nausea and vomiting induced by cancer chemotherapy. New England Journal of Medicine 307, 1476–1480. 111. Cunningham D., Soukop M., Gilchrist N.L et al. (1985). Randomised trial of intravenous high dose metoclopramide and intramuscular chlorpromazine in controlling nausea and vomiting induced by cytotoxic drugs. British Medical Journal 295, 250. 112. Lazlo J., Clark R.A., Hanson D.C. et al. (1985). Lorazepam in cancer patients treated with cisplatin: a drug having antiemetic, amnesic, and anxiolytic effects. Journal of Clinical Oncology 3, 864–869. 113. Tierney A.J., Taylor J. and Closs S.J. (1992). Knowledge, expectations and experiences of patients receiving chemotherapy for breast cancer. Scandinavian Journal of Caring Sciences 6, 75–80. 114. McCaffery M. and Pasero C. (1999). Pain: Clinical Manual for Nursing Practice. St Louis, MO: Mosby. 115. Ezzo J.M., Richardson M.A, Vickers A. et al. (2006). Acupuncture-point stimulation for chemotherapyinduced nausea or vomiting (Cochrane Review). The Cochrane Library Issue 2. Oxford: Update Software.

Chemotherapy 315 116. Stewart A., Bielajew C., Collins B., Parkinson M. and Tomiak E. (2006). A meta-analysis of the neuropsychological effects of adjuvant chemotherapy treatment in women treated for breast cancer. The Clinical Neuropsychologist, 20, 76–89. 117. Tanghe A., Evers G. and Paridaens R. (1998). Nurses’ assessment of symptom occurrence and symptom distress in chemotherapy patients. European Journal of Oncology Nursing 2, 14–26. 118. Richardson A., Ream E. and Wilson-Barnett J. (1998). Fatigue in patients receiving chemotherapy: patterns of change. Cancer Nursing 21, 17–30. 119. Piper B., Lindsey A. and Dodd M. (1987). Fatigue mechanisms in cancer patients: developing a nursing theory. Oncology Nursing Forum 14, 17–23. 120. Grandjean E.P. (1970). Fatigue. American Industrial Hygiene Association Journal 31, 401–411. 121. Selye H. (1974). Stress without Distress. Philadelphia, PA: J.B. Lippincott. 122. Nerenz D.R., Leventhal H. and Love R.R. (1982). Factors contributing to emotional distress during cancer chemotherapy. Cancer 50, 1020–1027. 123. Knopf M.T. (1986). Physical and psychologic distress associated with adjuvant chemotherapy in women with breast cancer. Journal of Clinical Oncology 4, 678– 684. 124. Ehlke G. (1988). Symptom distress in breast cancer patients receiving chemotherapy in the outpatient setting. Oncology Nursing Forum 15, 344–346. 125. Rhodes V.A. (1988). Patients’ descriptions of the influence of tiredness and weakness on self-care abilities. Cancer Nursing 11, 186–194. 126. Adamsen L., Quist M., Midtgaard J. et al. (2006). The effect of a multidimensional exercise intervention on physical capacity, well-being and quality of life in cancer patients undergoing chemotherapy. Supportive Care in Cancer 14, 116–127. 127. Baird S.B. (1988). Decision Making in Oncology Nursing. Philadelphia, PA: BC Decker. 128. Baxley K.O., Erdman L.K., Henry E.B. and Roof B.J. (1984). Alopecia: effect on cancer patients’ body image. Cancer Nursing 7, 499–503. 129. Freedman T.G. (1994). Social and cultural dimensions of hair loss in women treated for breast cancer. Cancer Nursing 17, 334–341. 130. Wagner L. and Bye M.G. (1979). Body image and patients experiencing alopecia as a result of cancer chemotherapy. Cancer Nursing 2, 365–369. 131. Dean J., Salmon S.E. and Griffiths K.S. (1979). Prevention of doxorubicin-induced alopecia with scalp hypothermia. New England Journal of Medicine 301, 1427–1429.

132. Love R.R., Leventhal H., Easterling D.V. and Nerenz D.R. (1989). Side-effects and emotional distress during cancer chemotherapy. Cancer 63, 604–612. 133. Clement-Jones V. (1985). Cancer and beyond: the formation of BACUP. British Medical Journal 291, 1021–1023. 134. Hesketh P.J., Batchelor D., Golant M. et al. (2004). Chemotherapy-induced alopecia: psychosocial impact and therapeutic approaches. Supportive Care in Cancer 12, 543–549. 135. Münstedt K., Manthey N., Sachsse S. and Vahrson H. (1997). Changes in self-concept and body image during alopecia induced cancer chemotherapy. Supportive Care in Cancer 5, 139–143. 136. Gallagher J. (1996). Women’s experiences of hair loss associated with chemotherapy: longitudinal perspective. Proceedings of 9th International Conference on Cancer Nursing, Brighton, UK, 1996. 137. Tierney A.J. (1987). Preventing chemotherapy-induced alopecia in women treated for breast cancer: is scalp cooling worthwhile? Journal of Advanced Nursing 12, 303–310. 138. David J.A. and Speechley V. (1987). Scalp cooling to prevent alopecia. Nursing Times 83, 36–37. 139. Keller J.F. and Blausey L.A. (1988). Nursing issues and management in chemotherapy-induced alopecia. Oncology Nursing Forum 15, 603–607. 140. Tierney A.J. (1991). Chemotherapy-induced hair loss. Nursing Standard 5, 29–31. 141. Lemenager M. et al. (1998). Chemotherapy-induced alopecia: a controllable side-effect. Oncology Nurses Today 3, 18–20. 142. Ron I.G., Kalmus Y., Kalmus Z., Inbar M. and Chaitchik S. (1997). Scalp cooling in the prevention of alopecia in patients receiving depilating chemotherapy. Supportive Care in Cancer 5, 136–138. 143. Dougherty L. (2006). Comparing methods to prevent chemotherapy-induced alopecia. Cancer Nursing Practice 5, 25–31. 144. Cavalli F., Hansen H.H. and Kaye S.B. (1997). Textbook of Medical Oncology. London: Martin Dunitz. 145. Crowe M., Kendrick M. and Woods S. (1998). Is scalp cooling a procedure that should be offered to patients receiving chemotherapy-induced alopecia for solid tumours? Proceedings of the 10th International Conference on Cancer Nursing, Jerusalem, 1998. 146. Dougherty L. (1996). Scalp cooling to prevent hair loss in chemotherapy. Professional Nurse 11, 507–509. 147. Blesch K.S. (1988). The normal physiological changes of ageing and their impact on the response to cancer treatment. Seminars in Oncology Nursing 4, 178–188.

316 The experience of treatment 148. Lehky T.J., Leonard G.D., Wilson R.H., Grem J.L. and Floeter M.K. (2004). Oxaliplatin-induced neurotoxicity: acute hyperexcitability and chronic neuropathy. Muscle and Nerve 29, 387–392. 149. National Institute for Health and Clinical Excellence. UK Clinical Guidelines for the Use of Adjuvant Trastuzumab (Herceptin®) with or Following Chemotherapy

in HER2-positive Early Breast Cancer. NCRI Breast Clinical Studies Group 14th December 2005. www. dh.gov.uk/assetRoot/04/12/63/84/04126384.pdf (accessed 30 July 2007). 150. Ueno T., Ohtawa K., Mitsui K. et al. (1997). Cell cycle arrest and apoptosis of leukaemia cells induced by Lasparaginase. Leukaemia 11, 1858–1861.

CHAPTER THIRTEEN

Radiotherapy Sara Faithfull

Radiotherapy plays a central role in the treatment of cancer. Over 50% of people with cancer will receive radiation therapy at some time. In the context of cancer therapy, its value lies in the local management of disease. Radiotherapy may be aimed at cure, may be palliative, or may be given as an adjunct to existing treatment. Its success depends on tumour bulk and the tumour’s sensitivity to radiation, as well as the tolerance of surrounding tissues to radiotherapy. Radiotherapy is the use of ionising radiation. The ionisation damages DNA and consequently causes cell death, especially when the cell attempts to replicate. Radiation affects both normal and malignant cells; however, the goal of radiotherapy is to preserve normal tissue function, while damaging the tumour. This is possible owing to various factors. For example, more damage is caused to cancer cells than to normal cells. The kinetics of the cell usually favour the recovery of normal tissue over that of the tumour, and this is exploited by giving radiation in small daily doses (fractionated radiotherapy), over several weeks. Side-effects from treatment are a result of normal tissue damage and may continue long after radiotherapy has finished. Radiotherapy treatment is often seen as an acute event from which recovery is rapid. However, when side-effects of radiation therapy are superimposed on existing functional difficulties, morbidity can be significant. Nurses are often unaware of the effects of radiotherapy or of how treatment works; with the

advent of combined therapies nurses need to be more aware of the impact chemo-radiotherapy has on the severity of side-effects and their implications for resuming normal life. Radiotherapy is mainly organised as an outpatient treatment, and as a result nursing support may not be available routinely to people undergoing treatment. Many people with cancer have the prospect of surviving their disease but can have side-effects of treatment in the short and long term that can be a debilitating sequel of radiotherapy.1 Recent years have seen an increase in awareness of the morbidity and the impact of radiotherapy treatment. Radiotherapy may cause long-term physical effects and have consequences for body image, sexuality and physical functioning.2 Much of the knowledge that exists as to how people react or cope with radiation treatment is focused on the physical effects, and much less on the psychological responses. However, radiation reactions can often exacerbate existing functional or emotional difficulties that can be as a result of the disease, or a combination of therapies. Many studies have identified the emotional and physical distress associated with radiotherapy.3–6 However, the proportion of people who experience distress or have psychological problems is unclear. In a study exploring the needs of radiotherapy patients, Fritzsche and colleagues found that over 50% of those assessed had adjustment disorders.7 Maraste et al. identified that 15% of women undergoing adjuvant breast

318 The experience of treatment

irradiation experienced distress as anxiety rather than as depression or other psychological states.8 More recent work has identified that individuals still fear radiation and consider it negatively.9 However, a small study by Hammick et al. does not identify whether this attitude influences people’s experiences or distress more widely.9 Young and Maher, in an audit of a counselling service, found that 44% of those attending a British radiotherapy centre had abnormal levels of anxiety.10 Despite identifying that there is a need for psychosocial care in radiotherapy only 30– 50% of those receiving treatment are motivated to accept an offer of counselling or psychosocial intervention.7 Nursing can play a major part, not only in understanding the treatment trajectory and sideeffects of therapy, but also in bridging the gap between the technical aspects of treatment and in providing research-based interventions and support.11 The invisible and highly technical nature of radiotherapy contributes to the fact that ‘few therapeutic modalities in medicine induce more misunderstanding, confusion and apprehension’.12 Radiation therapy has been in existence since the 1900s. In the past the hazards and biological basis of it were little understood, but there is now a growing body of knowledge that provides new and exciting prospects for how the treatment is used, and of developments for the future. Radiation is given in the form of X-rays, gamma-rays or electrons. Particles such as neutrons or protons are seldom used. Ionising radiation, by definition, is those types of radiation that produce ionisation of atoms and molecules with which they come into contact.13 A simple understanding of atomic structure can help to explain the nature of these changes. Atoms are essentially electric in nature. Ionising radiation has sufficient energy to cause atoms of cells in its path to lose orbiting electrons. When an electron is dislodged from its orbit the atom fragments acquire a positive electrical charge. These ‘free’ electrons interact with neighbouring atoms and hence these atom fragments acquire a negative electrical charge. When electrons are released from their orbit, energy in the form of free electrons is released at high speed and dis-

Energy

(a)

(b)

Figure 13.1 Ionisation and excitation of atoms. When an atom or molecule has too many electrons, it is called a negative ion. An atom with fewer electrons is called positive. The atom is said to be ionised when an electron is (a) completely removed, but (b) only excited when it moves from one orbit to another. This movement produces the emission of electromagnetic radiation or Xrays. (Based on Bomford CK., Kinkler I.H. and Sheriff S.B. (1993). Walter and Millers Textbook of Radiotherapy: Radiation Physics, Therapy and Oncology, 5th edition. Edinburgh: Churchill Livingstone.15)

lodges more electrons from neighbouring atoms, which in turn release energy, and continue further ionisations until all energy is dissipated (see Figure 13.1).14 Although this process is hard to visualise, it is almost like playing marbles, where one marble may knock others in its path causing them to scatter, creating more movement in a cascade. The electrically charged particles are called ions and the process of their development is called ionisation. This ionisation is responsible for the chemical and biological changes that occur to tissues in the form of radiotherapy. Ionising beams used in radiotherapy fall into two main types: (1) those that are electrically produced X-rays from a filament; and (2) those that are produced through the decay of radioactive isotopes, either naturally occurring or manufactured specifically in reactors.

Radiotherapy

Where do the rays come from? The rays produced by radiotherapy machines are electromagnetic beams such as X-rays. These are similar to light but of a higher energy and shorter wavelength, consisting of photons (see Figure 13.2). The rays occur when speeding electrons hit high atomic weight targets such as tantalum. The early kilovoltage machines produced electrons from heated filaments. Modern megavoltage machines, known as linear

319

accelerators, use a radiowave guide to accelerate further electrons produced in this way. These electrons bombard the target at high energy, producing X-rays in the range of 4–24 MeV (million electron volts). This form of radiotherapy is termed ‘external beam’ and is used for a variety of different treatments as outlined in Table 13.1. At low energies the X-rays produced are absorbed to varying degrees by tissues dependent on their density, and this results in a clear

10 6 m BBC television TV and VHF Radio waves 10 3 Radar 10−6

Infrared Visible ultraviolet light

10−9

Diagnostic X-rays

10−12

Superficial Orthovoltage Therapeutic X-rays Gamma rays Mega voltage

Figure 13.2 The electromagnetic spectrum. The electromagnetic spectrum extends from wavelengths of many kilometres (103) to less than 1 picometre (10−12). These invisible waves are called X-rays and gamma (γ)-rays.

320 The experience of treatment Table 13.1

Types of radiation

Type

Energy

Oral or parenteral radiotherapy Radioactive isotopes administered orally or parentarally; their effect is targeted to tissues where they concentrate. Brachytherapy Placing of radiation sources close to the tumour. A high dose is received by the tumour and less by surrounding normal tissues.

External beam (teletherapy) Superficial Orthovoltage Low energy X-rays do not possess 50–150 keV skin-sparing properties. 250–500 keV Megavoltage >1 MeV (usually High energy and have skin-sparing 4–16 MeV) effects. Gamma rays 2.5 MeV 4–30 MeV

distinction between bone, soft tissue, and air, which is visible on diagnostic radiographs (X-ray films). Irradiation to superficial layers occurs with photon energies of 150 keV and ortho-voltage at 300 keV. Deeper tissues are penetrated by megavoltage energies (4–25 MeV). These differences in photon energy levels are important, as increased energy of radiation produces a greater penetration of tissues. The different energy levels are often used for differing sites of radiotherapy treatments. Electrons created by removing the target travel only short distances so are limited in their therapeutic use, but are very good for superficial treatments such as basal cell skin cancers. Radiation dose is defined as the amount of energy absorbed per unit mass of tissue. Radiation dose is measured in gray (Gy): 1 gray = 1 joule/kg. For a conventional curative course of external beam radiotherapy the dose ranges from 55 Gy to 65 Gy and this is given in daily treatments of 1.6–2.5 Gy over 4–6 weeks depen-

Source

Clinical use

Iodine-131 Strontium-89

Thyroid tumours Multiple bone metastases

Iridium-192 (seeds or wires) Iodine-125 seeds Caesium-137

Sources can be implanted directly into small tumours such as the tongue, lip or breast. Intracavitary sources for cervical and uterine cancers.

X-ray tube X-ray tube

Skin tumours Superficial sites, e.g. breast, rib, sacrum. Main source of therapeutic beams for sites other than skin.

Linear accelerator

Cobalt Linear accelerator

Superficial sites, e.g. skin, lymph nodes (depth depends upon electron energy).

dent on radiotherapy centre. These treatments over time are termed fractionation. External beam radiotherapy utilises a beam from which the patient is placed at a defined distance (usually 100 mm). The isodose is the absorption of radiation in the tissues and varies at any point within the radiation field, depending on the distance of the tissue from the X-ray source. These isodose distributions often look like contours on a map and reflect changes in radiation concentration (see Figure 13.3). Highenergy X-rays produced by the linear accelerator focus most of their energy at some distance from the skin surface, therefore leaving the surface skin relatively unaffected by radiation. This is known as the ‘skin-sparing’ effect. Alternative radiation sources are those from naturally occurring radionucleotides; these elements have unstable nuclei, which release energy in the process of spontaneous disintegration. This may be in the form of gamma rays, high-speed electrons, or other particles. A variety of isotopes

Radiotherapy

321

+

6 MeV 10 10 cm

+

6 MeV 10 10 cm

30° wedge

60

90

80

50

70

60 40 50

40

30

30

20 20 10

10

Figure 13.3 Isodose curves. The isodose is the distribution of absorbed X-rays from the individual beams. The maximum value is labelled 100% and lower dose values are drawn at 10% intervals. The isodose curve can be altered by insertion of 30º wedge into the beam.

is also used (see Table 13.1). These have a range of therapeutic uses that are continually being developed. Brachytherapy involves the delivery of radiation by placing sources close to the tumour. The

dose of radiotherapy decreases in proportion to the square of the distance from the source. Therefore the tumour receives a higher dose, with little radiation reaching the surrounding normal tissues. The most common example of brachytherapy is

322 The experience of treatment

the insertion of interactive sources (see Table 13.1), for example in uterine or cervical carcinomas. Brachytherapy is often delivered by placing the radiation source in small catheters that can then be safely inserted and withdrawn, termed ‘afterloading’; these techniques are designed to provide the ability to care for patients with the maximum radiation protection for staff.16 Radioactive isotopes for systemic treatments are administered orally. Localisation of the isotopes around tumours occurs when the chemical that is radioactive is metabolised. An example of this is iodine-131, which is used to treat cancer of the thyroid. Research into tagging of radioactive nucleotides to monoclonal antibodies has been progressing, and future therapies are being developed that combine both isotope technology and prevent normal tissue injury.17

Cells in action: radiobiology The body’s cells are affected by radiation in several ways through a series of molecular and genetic events.18 This can be a direct or indirect interaction with tissues to produce short-lived ion radicals. These are associated with damage to deoxyribonucleic acid (DNA) and result in singleor double-strand breaks in its structure. This damage may lead to a chronic persistent alteration in the micro-environment and an aberrant tissuehealing response. Normal tissues have a greater ability to repair themselves than cancer cells.19 Differences in how cells respond to irradiation are some of the reasons for the differences seen in the radiosensitivity of different cancers. The response to radiation is also affected by oxygenation, the number of cells actively dividing, and the rate at which cells grow within the tumour.14 These changes are often termed the ‘4 Rs’ and these steps are important in understanding the rationale behind how radiotherapy treatment works and why variation occurs in individual tissue damage and radiation side-effects. The ‘scattering marbles’ effect described earlier has two modes of action. They interact directly or indirectly with the tissues. The direct damage is in the nucleus of the cell and affects the DNA, rather like chopping up spaghetti, and the cell is

either unable to repair itself or does so inaccurately, resulting in cell death after several cell divisions. The indirect effects involve interaction of free radicals within the cells. These free radicals are OH− ions and are oxidising agents. The mechanism is poorly understood but the result is a disruption in cellular and tissue function.14 The direct effects are thought to be most damaging to cells (see Figure 13.4). This disturbance of DNA synthesis leads to abnormal mitosis. Cells that have a short mitosis (for example, mucosa and skin) will show signs of radiation damage more quickly than those whose cycle is long, and this explains why some of the symptoms experienced appear many months to years following treatment. The considerable variation in radiosensitivity of different tissues is not fully understood. In experiments in the laboratory it is possible to analyse these differences and it is clear that cell survival after irradiation shows an initial curve of cell multiplication followed by rapidly declining cell numbers (see Figure 13.5). This curve represents the ability of cells in some way to repair themselves and this is termed ‘sub-lethal damage’. Differences in this repair capacity between cancers may be part of the explanation for the different responses of tumours to fractionation regimes, especially when using low doses of radiation.20 A series of fractionated doses increases the difference in repair ability between normal tissue and tumour for several reasons. These are termed the ‘4 Rs’ (see Box 13.1): 1. 2. 3. 4.

repair of injury redistribution of cells within the cell cycle repopulation re-oxygenation.

Normal tissues surrounding the cancer also show different degrees of sensitivity in the extent of damage and the timing of the effect of this damage. These mechanisms are linked to the sideeffects experienced: ‘acute’ reactions occur within 3 months of treatment, while ‘late’ reactions may occur up to several years after treatment. Tissues having a fast multiplication, such as skin and mucosal surfaces, show damage more quickly, whereas damage to slow-dividing cells may be responsible for many of the late complications of radiation.21

Radiotherapy

323

Radiotherapy

Interacts with DNA biochemical modification

1. Direct ionisation: formation of unstable radicals, which disrupt the DNA structure and induce chromosome abnormalities.

OH− 2. Indirect ionisation: formation of ionised active radicals or free radicals, which disrupt the chromosome structure.

H2O+

Damaged DNA

Correct repair

Mitotic delay

No repair

Inhibition of continued reproductive ability

Figure 13.4

Effects of external beam radiation.

The dose of radiotherapy can have major implications for the response of tissues to irradiation. The dose–response curves both for normal tissues and cancer cells are similar. A relatively small change in the dose can have major implications both for tumour control and for the side-effects of treatment. The optimum dose is often balanced against the possible complications; however, some individuals appear to be more sensitive than

others.22,23 Certain tissues are very sensitive to radiotherapy (for example, eyes, lung, ovaries, and testes) and the dose that can safely be given to these areas is very limited. This tolerance to treatment is often the factor that limits the dose of radiation.24 The relationship between dose and the probability of curing the cancer is shown in Figure 13.5. There is a threshold dose below which tumours are not controlled but above which

324 The experience of treatment Tumour control or complications

A

Irradiation Volume

Tumour control

Complications and side-effects

Tumour

Volume

Dose (Gy)

Figure 13.5 Dose–response curves for tumour control and complications. Small changes in radiation dose have major effects on the possible complications. A is the optimal dose giving high tumour control with a low complication rate. If you move to the right there is a significant increase in the number of side-effects. To the left there is a reduction in the tumour control.

control increases steeply. This also applies to normal tissue damage, but with fractionation it is displaced to the right. The greater the difference between the two curves, tumour control and complications, the greater the therapeutic ratio.25 The

link between acute and late effects of radiation is often disassociated in that a severe late reaction does not necessarily follow acute toxicity. Late tissue damage seems to be more related to fraction size than to acutely reacting tissues.

Radiotherapy

Fractionation is a technique that reduces the damage to normal tissues by giving the radiotherapy in smaller parts. Using smaller fraction sizes spares the normal tissue rather than the tumour, since small, frequent, sub-lethal damage allows normal cells to be repaired between the daily treatments. Many tumours have a poor

325

blood supply and have regions of hypoxia that are relatively resistant to radiotherapy. Increasing the treatment time using a fractionated schedule allows hypoxic cells to re-oxygenate and redistribute themselves within the tumour so that more are in the radiosensitive phases of the cell cycle (see Figure 13.6).26

100%

Percentage hypoxic cells

All tumour cells are hypoxic

Re-oxygenation

10%

First radiation treatment

1% Ideal time for second radiation treatment

Repopulation

Time

Figure 13.6 The pattern of oxygenated and hypoxic cells during radiotherapy. Radiotherapy is commonly given as a series of equal doses. Each daily dose or ‘fraction’ kills the same proportion of cells. When solid tumours grow, they often outstrip their blood supply and have areas of hypoxia. Hypoxic cells are two to three times as radioresistant. When multiple small doses of radiation are given, the oxygenated cells, being more sensitive, are killed first. During the interval between dose fractions, killed cells are eliminated and the previously hypoxic cells gain better access to oxygen. This process of re-oxygenation is utilised by giving the total radiation dose in many smaller doses.

326 The experience of treatment

Box 13.1

The ‘4 Rs’ of radiotherapy

It is possible to think of the 4 Rs as being similar to the effects of a journey on a tube train in rush hour. The cancer cells are a group of people huddled together in the carriage. The train is packed, people are unable to move, you feel like a sardine if you are standing, but relieved if you have a seat. This is like the hypoxic cells in the tumour squashed together, with the surrounding cells having more space and being well oxygenated. The train pulls into a station and the train empties; those near the door now have more space so people spread out. This is rather like repopulation; the cells grow with the additional space and those that are hypoxic become better oxygenated. The train continues until at the end of the rush hour few standing people remain. The stops at the stations represent the fractions of radiation until there are no more viable cancer cells remaining.

Conventional fractionation is in 2 Gy treatment doses; however, there is very little consensus on optimal radiotherapy regimens.27 Recent developments in radiotherapy have explored improving fractionation schedules and there are several regimens that are currently used. Accelerated treatment aims to overcome the problem of tumour cells repopulating as rapidly as the normal tissues, as this is a type of radioresistance.28 Treatments are given twice per day to reduce the overall treatment time. Hyperfractionated treatment aims to improve the therapeutic ratio, reducing the dose given in each fraction.29 This is to reduce late sideeffects while also permitting an increased total dose to the tumour. Hypofractionated treatment, in contrast, gives a smaller number of radiation fractions, but the dose per fraction is increased. The total dose is lower than conventional treatments because of enhanced late side-effects. Hypofractionated regimens are often used for palliative treatments so that the course of treatment can be shorter.30 The homogeneity and accuracy of the radiotherapy are important, as the dose received by the target determines the outcome of the therapy and the probability of treatment side-effects.20 Accuracy is achieved by using two or more radiation fields.31 A composite isodose plan is drawn showing the isodose distributions from the individual beams. These beam characteristics may be altered

with wedges or compensators when angled fields are used, or when there are changes in the patient’s contour (see Figure 13.3). Most rectangular fields of radiotherapy are determined by thick collimators that are on the radiotherapy machine head, which, once set, determine the size of each field being given. Further shaping of the beams can be achieved by using shaped lead or alloy blocks, placed on trays in the path of the planned irradiation volume. The volume of the tissue to be treated is determined by findings from diagnostic computed tomographic (CT) or magnetic resonance imaging (MRI) scans and knowledge of the usual patterns of spread of the cancer (see Figure 13.7). The target volume includes a margin of surrounding tissues, which might contain microscopic disease, but also allows for any inaccuracy of the treatment techniques – for example, patient movement or machine positioning.31 The reproducibility of daily treatment is an important factor in delivering accurate radiotherapy. Most radiotherapy is planned in two dimensions, but more sophisticated computer programs are used for shaping complex field arrangements for three-dimensional planned treatment. This type of planning requires reconstruction of tumour and target volumes from CT or MRI images so that the treatment volume can be localised and defined accurately for deep internal structures (see Figure 13.7).32 During these procedures, localisation of the target volume is achieved with reference to the person’s contours, as well as indelible skin markers such as tattoos or ink. Structures that may be at risk from toxicity of treatment can be identified and the field sizes and beam arrangements modified if appropriate. When sensitive tissues are adjacent to the treatment fields, fixation devices such as moulds or plastic casts are used to keep the person as still as possible (see Figure 13.8). The radiotherapy dose prescription and fractionation regime is then defined, detailing the dose to be delivered to target volume from each beam during radiotherapy. The standard dose is defined at the isocentre where the beams intersect. Once this plan of therapy has been devised, simulation of therapy is performed to verify the size, shape, and placing of the proposed beams (Figure 13.9).33

Radiotherapy

(a)

327

(b)

TV T

FA

R SC

Maximum tumour dose (c) Femoral heads

Rectum

Figure 13.7 Principles of treatment planning. (a) CT topograms of chest to show levels of CT images. (b) CT image through the centre of the target volume. The target volume is drawn with a 1 cm margin. This example shows a pelvic treatment for carcinoma of the prostate. Sensitive normal tissues such as femoral heads and rectum are also outlined. TV, target volume; T, tumour; SC, spinal cord; FA, femoral heads; R, rectum. (c) The isodose distribution is outlined. This example is of a pelvic treatment for carcinoma of the prostate. Maximum tumour dose = 100%; minimum tumour dose = 95%. The femoral heads and rectum are identified to help avoid sensitive tissue as much as possible.

A simulator machine is identical to a therapy machine in its geometric specification and movements, but differs in that it emits diagnostic Xrays that produce an image of the tissue structures to be irradiated. At this time, the positioning of radiation beams can be checked and the reference markers on the skin used to set up the treatment (see Figure 13.10).

The treatment trajectory The start of radiotherapy can be a lengthy affair, beginning with the planning of treatment, visits to the simulator and possibly a mould before starting radiotherapy. Although radiotherapy is given daily there are different stages of treatment, which can produce differing anxieties and fears. Anxieties

328 The experience of treatment

Figure 13.8 Mould for immobilisation for treatment of head and neck cancer.

at the start of treatment may not necessarily become less as familiarity with treatment is gained. Studies have shown that emotional distress may be exacerbated by the completion of treatment, and unexpected physical side-effects may continue for many months after treatment is completed.34 This trajectory of radiotherapy treatment can be thought of in three parts: the initial planning and preparation before starting treatment; the lengthy time of undergoing radiotherapy; and completion of treatment when visits to the treatment machine end. Planning

Figure 13.9 A simulator film shows the localisation of the target volume. The simulator is identical to a therapy machine but differs in that it emits diagnostic X-rays. The positioning of the radiation beams can be checked in relation to the tattoos used to set up treatment.

The prospect of radiotherapy adds considerably to the fear and anxiety that may already be present following a diagnosis of cancer. Fear and misunderstandings of the use of radiation treatment, and negative attitudes regarding its effectiveness are known to be common.35 In a study of women who were deciding whether to have either a mastectomy, or a lumpectomy with radiotherapy, concerns about the efficiency of radiation and its side-effects significantly influenced decisions.36 Similar influences were found in communication in relation to palliative radiotherapy, and it has

Radiotherapy

Figure 13.10

329

Planning radiotherapy.

been reported that patients who were receiving radiation with palliative intent were less involved in decision making than those receiving radiation with the purpose of cure.37 Radiation therapy machines are frequently situated in hospital basements and are therefore isolated. This may serve to create a mystique about the treatment and add to the apprehensions about having radiotherapy. The planning stage of radiotherapy is often perceived as taking a long time; this may be misconstrued as being on a waiting list for treatment, or having an indolent cancer as there appears to be no rush to provide therapy. People are often unaware that much of the preparation before treatment is essential for the accuracy and reproducibility of their radiotherapy. Planning and preparation for radiotherapy is ‘behind the scenes’, so that the extent of work required before treatment can proceed is not obvious. Once treatment has started it may take only a few seconds to deliver the therapy; however, checking the accuracy and

reproducibility of that radiotherapy is just as important. The feeling of delay, and CT or MRI tests can raise anxieties over the extent of disease or suggest that full information about the radiotherapy has not been given. Research study 13.1 reveals these to be central concerns of people undergoing radiotherapy.38 This can be a very lonely time; lots of investigations have to be undergone, but there is little contact with health professionals. Studies have identified the extent of fear and psychological morbidity associated with this stage of therapy. A controlled study using mock radiotherapy showed that 75% of people developed symptoms of nausea and fatigue following what they thought was therapy.6 High levels of anxiety were found prior to treatment in a similar study.39 Restlessness, anxiety, apprehension, social isolation, unfounded pessimism over the likely outcome of treatment, and feeling withdrawn have been reported. This misapprehension about radiotherapy may be due to the lack of information

330 The experience of treatment

Research study 13.1 Eardley A. (1986). Expectations of recovery. Nursing Times 23 April, 53–54.38 This study highlighted the general apprehension about treatment and misconceptions surrounding it. Thirtynine patients were interviewed 1 week into their radiotherapy treatment and asked about how they felt about radiotherapy. One man described his wife’s anxieties: She’s not very happy because she’s just hanging around – she thought she’d start straight away. She worried because she had those X-rays and no one’s explained what they’re for . . . it’s not knowing what’s going to happen . . . she was upset today after this Xray, two doctors walked away from her whispering to each other, not saying a word to her. She got it into her head now that she’s got something else. Another had a fear that he would be crushed by the machine: I have a fear of machines, a fear of something coming on top of me. It was clear from the interviews that the amount of knowledge and understanding of radiotherapy varied considerably: Even now, I don’t know anything about the treatment – I just know I’m having preparation (mould room), not what the preparation is for. Over half of those interviewed had worries about some aspect of treatment. Eighty-two per cent knew about their treatment and how long it would take; those remaining had little knowledge of what to expect. Thirty-six per cent were unaware that they might experience side-effects from the radiotherapy. Worries were expressed concerning cancer symptoms that had increased or arisen since radiotherapy referral.

given prior to the planning of treatment. Peck and Boland found that 60% of people were unprepared for the frequency, number of sessions, and prolonged course of therapy.6 Most had received little information about the nature of radiotherapy and instead had gathered information from relatives and friends. Another study found that 52% of patients referred for radiotherapy felt that their referring physician had been no help in preparing them for radiation treatment,40 and neither the

referring doctor nor the radiotherapist was considered by patients as an individual to whom they would bring their fears or emotional problems. Educational interventions prior to start of radiotherapy are now more commonly provided, and structured information and visits to the radiotherapy centre are often encouraged. Significant benefits have been demonstrated by providing such educational packages, with patients demonstrating less anxiety and greater awareness of support services that are available.41 Providing an orientation to the radiotherapy machines and an initial interview prior to radiotherapy is known to reduce anxieties and enhance compliance with therapy, which in turn contributes to better treatment.42,43 Preparation for radiotherapy should include: • provision of information about the treatment and the process of planning • provision of information about practicalities such as car parking, driving and length of time of treatment • prior to starting therapy, orientation to the machines and radiotherapy unit • offering clear guidance on what to do prior to planning, such as to have a full bladder, and on how to care for radiotherapy skin marks • assessment of levels of anxiety and depression prior to starting therapy. During treatment

The fractionation for radiotherapy may differ depending on whether a palliative or curative regime is used, but may be completed in one day or last for several weeks. Radiotherapy is a difficult treatment modality to comprehend: ‘being alone in a room and exposed to an invisible force that can destroy cells is an abstract experience that takes time and repeated information to become clear’.44,45 Individuals and families become used to the daily routine; however, of key focus and concern are the practicalities and costs of travel to the hospital. Travelling can be an additional burden for those who may be feeling unwell or frail due to their disease.46 The experience of radiotherapy is physically demanding, and distress or anxiety may change during treatment, depending on how

Radiotherapy

people feel but also on where radiotherapy fits into their wider cancer treatment plan. A study of 45 patients treated with external beam radiotherapy found significant changes in anxiety during the course of treatment.47 Those who had an initially high level of anxiety reported a significant reduction as treatment progressed. Those with moderate anxiety reported no change, and those with low levels of anxiety reported significant increases as treatment progressed. It appeared that fear at the outset of treatment was predictive of adaptation to treatment. Radiotherapy side-effects, which may appear near the end of treatment, could have caused the increases in anxiety, particularly if these were interpreted as a sign of recurrent disease. After treatment

The completion of radiotherapy treatment can be an extremely difficult time for patients. The day-today contact with radiotherapy staff and fellow patients may have provided informal support and reassurance. This is a time when nursing and medical support is, to some extent, withdrawn. Community care professionals may provide help, but they do not always have an expert knowledge of radiotherapy or its side-effects. Readjusting to ‘normal life’ at the end of treatment may not be easy. Loss of hope or confidence about the effectiveness of treatment, and depression, have been shown to feature at this time.48 Ward et al.’s study of women’s reactions to completion of treatment identified that the end of treatment did not always bring relief.36 Out of the 38 women interviewed, 30% found termination of treatment upsetting, and this was frequently connected to a worsening of side-effects, not just a withdrawal of treatment. Women who were most anxious or depressed at the beginning of treatment were those who were most upset at treatment completion. Other studies suggest that emotional distress at the beginning of treatment is predictive of post-treatment functioning.47,49 Eardley’s longitudinal study of radiotherapy for head and neck cancer revealed that two-thirds of people felt that they had been inadequately prepared for discharge and were surprised at the length of time they took to recover from radiotherapy.50 There is an assumption on the part of health carers that the end of treatment will come as a relief. The loss of stability resulting from a cancer

331

diagnosis may find temporary resolution in the routine of treatment but this can be shattered when it is completed.4 ‘Separation anxiety’ may be seen at the end of treatment. Personal account 13.1 illustrates the extent of one person’s anxiety. Since completing treatment can be very difficult, it may be helpful to ask about feelings surrounding

Personal account 13.1 One woman’s experience of radiotherapy This account concerns a 65-year-old women with cancer of the right breast who, following surgery and wide axillary node clearance, was treated with 15 fractions of adjuvant radiotherapy. At interview prior to completing treatment, she was obviously well informed about her treatment and had supportive relationships with her family. She was keen to talk and had very mixed feelings about finishing her treatment. One part of me is pleased because I’ve begun to feel a bit unwell (on treatment) but . . . I also feel vulnerable . . . coming here, there are people I can talk to, people looking after me. She wanted to regain control of her life, feeling that she had somehow ‘lost her way’. She seemed unsure and fearful of both treatment and its cessation. She had found radiotherapy ‘frightening’ and ‘alien’. Many of her fears had been fuelled by media publicity about damage caused by radiotherapy. At a subsequent interview, when she was beginning to feel better, most of the physical symptoms identified at the end of treatment were no longer a problem. She felt that she had been keeping up appearances for her family and friends, who expected her to be relieved that treatment was over. Friends kept saying ‘you must be so pleased it’s all over’: I was saying yes I am, it’s great, but it was all lies really . . . the day after I finished my treatment, I felt quite awful . . . not well . . . and abandoned really . . . It seemed as though there is nothing. You get all this intensive treatment and then it’s shut off . . . after the radiotherapy’s finished, you shouldn’t need to have any more contact but you do . . . I felt that everything had been taken away from me, although coming here had been a tiring routine I felt safe, I knew I could ask . . . what you need is a daily contact and a gradual weaning away from your dependency. I can’t be isolated in feeling like this . . . a gradual weaning off and I wouldn’t have felt so bereft.33

332 The experience of treatment

this, so that the insecurity over losing a ‘safety net’ can be acknowledged and discussed;34,36 these feelings can be complex and may affect adjustment to cancer more generally. The feeling of needing to gain control after treatment and ‘get back to normal’ may be pressing, while for others the end of treatment is experienced as an anticlimax.

SIDE-EFFECTS OF RADIOTHERAPY Radiotherapy treatment is limited by the severity and frequency of its side-effects. Adverse effects of treatment can be very debilitating and have a substantial impact on quality of life. Radiobiological data have revealed the mechanisms that cause side-effects, the immediate biological events trigger a series of genetic and molecular changes that lead to clinical injury. This process changes over time so that acute effects (occurring during and within the first 3 months of radiation) may be different from those experienced as late effects (3–12 months after radiation). Research has identified a number of pro-inflammatory cytokines that lead to damage to epithelial cells and subsequent fibrosis. Furthermore these events can develop over many months or years.18 Because the events occur dynamically, the distinction between acute and late effects is not clear-cut. Therefore Table 13.2

these terms tend to be used for distinguishing management of symptoms rather than defining different biological effects. There are many assessment tools for the monitoring of radiation sideeffects and cancer treatment toxicity. The result of this is that side-effect incidence data from patients who have received radiotherapy are often unreliable and difficult to compare between differing treatments and centres.51 As clinical trials are becoming more extensive and radiotherapy treatments are revised, the documentation and assessment of side-effects is becoming clearer. One major problem is that, unlike many anticancer agents, the side-effects of radiotherapy develop in several stages. Late radiotherapy sideeffects may take many years to develop and are often progressive and chronic, and therefore assessing and monitoring the toxicity of radiotherapy treatments is difficult.23 The link between total dose of radiation and its biological effect is well known, with the higher doses causing more adverse effects. The sensitivity of particular tissues to radiation also determines the side-effects of treatment. Those tissues with a high cell turnover often show more acute toxicity than tissues with a slow cell turnover. Table 13.2 shows some of the treatment and biological characteristics that contribute to acute and late radiation reactions.

Characteristics of early and late radiotherapy reactions in normal tissue

Property

Early responding tissue

Late responding tissue

Occurrence

Weeks to months, the latent time is independent of dose, but time for healing to occur is dose dependent. Low High Rapidly self-renewing, stem cells or functional cells. Mucosa, skin, intestinal epithelia, urinary epithelia, bone marrow, lung alveolar, testes, and ovaries. Regeneration, resulting in stem cell depletion and functional breakdown.

6 months to 5 years. This is dose dependent.

Sensitivity for dose per fraction Fractionation timing Tissue characteristics Examples of tissues

Response to radiation injury

Symptoms

Transient and usually reversible, but may continue into a late reaction.

High Low Slowly self-renewing. Muscle, liver, kidney, brain, spinal cord, nerves, and cartilage. Repair of sub-lethal damage, loss of parenchymal cells, fibrosis, and vascular damage. Irreversible, progressive changes, but functional compensation may occur.

Radiotherapy

Often clear distinctions are made as to how different tissues respond to radiation; however, this is more complex than such simple classifications suggest. There are many exceptions, and tissues or organs proceed through several phases. For example, the urothelium is very sensitive to radiation. Symptoms are often described as acute, but injury can also become apparent after a long latent period because of the low cell turnover in the urothelium. Another example is that of lung tissue, where two waves of damage may be recognised, the first occurring 3–8 months after irradiation, and lung fibrosis, which develops after about 1 year.23 The extent and occurrence of symptoms is linked not only to the susceptibility of the tissue, but also to the innate susceptibility that the individual has to radiotherapy. Clinical and experimental studies are beginning to show that there is a genetic predisposition to hypersensitivity to radiation in normal tissues.22 This would explain the range of side-effects occurring among those who receive similar radiotherapy treatments. Concurrent disease, age, and adjuvant therapy add to the predisposition to side-effects; however, these factors are not as yet clearly defined. Symptoms occur as a result of tissue damage through the effects of radiation. In acutely responding cells, cell division may fail at some stage during mitosis. Non-proliferating cells may suffer apoptosis or cell death, or remain alive but be unable to perform their function. These biological effects result in tissue breakdown and inflammation. At the end of treatment the remaining cells repopulate and recover. Late reactions in tissues often result from vascular changes as a result of the chronic inflammatory effects. This is seen in telangiectasia, where dilated capillaries appear on the skin surface.52 The endothelial cells lining the capillaries are damaged, leading to irregular proliferation of surviving cells, changes in thickness, distortion, and thrombosis in the smaller vessels. This affects the blood supply to the tissue, leading to secondary damage.51,53 Radiotherapy side-effects can have enormous consequences if poorly managed, and can cause debilitating chronic problems, with a subsequent diminished quality of life.54 This has led to litiga-

333

tion and claims for compensation by people who have been badly affected, and may not have been warned of the possibility of late effects occurring. The management of radiotherapy-induced side-effects is an important part of care; symptoms may be experienced during therapy but also many months to years after treatment.

Fatigue Fatigue is recognised as a common symptom of radiotherapy, which not only occurs during treatment but also continues after the radiotherapy has ended. The incidence of moderate to severe fatigue following radiotherapy has been reported as between 32% and 59% of those undergoing treatment, and it is known to fluctuate over the treatment trajectory.55–57 Although radiotherapy is a localised treatment with toxicity related to the specific site of the body being treated, fatigue can also be a systemic effect of radiotherapy and can significantly impact on quality of life.58,59 The management of fatigue is often limited during radiotherapy, with an undue focus on anaemiarelated problems rather than providing wider support.60 Possible causes of fatigue

The aetiology of fatigue may also be linked to certain sites of treatment. For example, in radiotherapy to the chest, such as in the treatment of breast cancer, the inclusion of sensitive lung tissue within the radiotherapy field may be linked to fatigue. The occurrence of radiation-induced pneumonitis or later fibrosis may also exacerbate fatigue.61 The difference in incidence according to the site of treatment may be linked to the cell kinetics and ability of the tissues to repair themselves. The pattern of fatigue The pattern of fatigue following radiotherapy varies depending on the site and stage of therapy. Haylock and Hart first highlighted the changing pattern of fatigue symptoms during radiotherapy.62 Fatigue is seen to increase over the course of radiotherapy treatment but has different

334 The experience of treatment

incidence depending on the site and disease (see Figure 13.11). In a study of men receiving radiotherapy for prostate cancer, fatigue increased from 7% at baseline to 8% mid-radiotherapy and 32%

at completion of treatment.55 In a study of women with breast cancer, this weekly variation did not occur but fatigue decreased over the 3 weeks following completion of radiotherapy.63 Fatigue has

24

23 Breast Lung 22

21

20

19

18

17

16

15

2

4

6

8

10

12

14

16

18

20

22

24

26

28

30

32

34

36

Days after commencement of treatment

Figure 13.11 Mean fatigue scores during radiotherapy. Vertical lines indicate Sundays. Reproduced with permission from Haycock P. and Hart L. (1979). Fatigue in patients receiving localised radiation. Cancer Nursing 2, 461–467.62

Radiotherapy

been shown to continue after completion of therapy; in one study up to 39% of patients were still experiencing fatigue at 3 months following radiotherapy treatment.5 The severity of fatigue for patients undergoing radiotherapy has been defined by patient self-report;57 in a study of 161 radiotherapy patients, symptom severity as mild to moderate fatigue was identified as occurring in 58.8% of patients, and severe and very severe fatigue was reported in 16.4% of patients. The descriptions also give insight into the changing nature of the fatigue. Other studies have found that fatigue and skin problems were the most frequently reported side-effects of patients undergoing radiation for lung cancer, although levels of fatigue were higher at the start of treatment compared to women being treated with radiotherapy for breast cancer.64 In head and neck cancer, the pattern of fatigue was at first periodic, but during the last 2 weeks of treatment became more continuous. An interview study (n = 30) of the experience of radiotherapy to the head and neck found that two-thirds said they still felt tired and weak 6–8 weeks after radiotherapy had been completed.20 Men and women experienced different patterns of symptoms following radiotherapy to the pelvic area, men experiencing a lower incidence of fatigue. Women experienced increasing levels of fatigue over the course of the treatment and it was worse in the afternoons. Intracavitary treatment for gynaecological disease has been found to add to the extent of fatigue symptoms.65 Fatigue is also a very debilitating symptom of cranial irradiation for brain tumours. A longitudinal study of patients (n = 19) having cranial radiotherapy for primary brain tumours found that a specific pattern of incidence was experienced.66 A daily diary was completed for 6 weeks after treatment and patients were interviewed 1 month and 3 months after treatment. The pattern of symptoms showed a peak of symptoms 2 weeks after therapy; patients complained of feeling fatigued, drowsy, and lethargic. This improved after several weeks but occurred again at 5–6 weeks and was exacerbated by feelings of lack of concentration, drowsiness and lethargy (see Figure 13.12).67 This pattern of symptoms had not previously been identified, which may be because previous studies had used cross-sectional and retrospective research designs. The daily diary

335

enabled fluctuations in fatigue to be recorded. This pattern of symptoms appears distinct to that seen in patients undergoing cranial irradiation, and its aetiology may be due to the specific cells affected by the irradiation. The fluctuations demonstrated in these various studies may not be generalisable, as other researchers have not found similar patterns, but they highlight the need to look at subgroups in radiotherapy research.63 Factors that might influence the occurrence of fatigue

While fatigue is expected to accompany radiotherapy treatment, it is difficult to predict who may be most badly affected. Functional status may be an important factor in mediating cancerrelated fatigue.58,68 The physical complications of radiotherapy are linked not only to the cell types within the treatment field, but also to the volume and dose. The site of treatment is predictive, in that incidence of fatigue varies by site. Other factors that have been suggested are adjuvant therapy, hormone therapy chemotherapy, or surgery at the time of, or before, radiotherapy treatment. There is evidence for increased levels of fatigue with combined modality treatment. In a survey of 403 patients who were receiving a variety of adjuvant treatments, chemotherapy and radiotherapy (58%), radiotherapy (38%), and chemotherapy alone (5%), 90% reported that treatment had an effect on their energy levels.69 For 37% this did not improve once treatment was completed. The younger patients (100 colonic cancer by age dominant adenomatous polyps are found in 50 years if untreated the colon. Attenuated FAP may lead to less (2–100 polyps); extracolonic features include osteomas, epidermoid cysts, CHRPEs (congenital hypertrophy of the retinal pigment epithelium), upper gastrointestinal polyposis and malignancy, desmoid tumors, and an increased risk of peri-ampullary carcinoma, papillary thyroid, brain tumours, hepatoblastoma and sarcomas 60–80% risk of colorectal Autosomal Mainly colon cancer and endometrial dominant cancer over lifetime; cancer, but also increased risk of 40–60% risk of cancers of the ovary, urothelium, endometrial cancer over stomach, brain, and small bowel. lifetime Hepatobiliary and pancreatic cancers have also been reported

von Hippel– Lindau disease (VHL)

VHL

Li–Fraumeni syndrome

TP53

Cowden’s syndrome

PTEN

BRCA1, BRCA2

Risks

Mainly breast and ovary, but also increased risk of fallopian tubes, peritoneum, prostate, and pancreas, and melanoma Haemangioblastomas of the cerebellum and spinal cord, retinal angiomas, renal cell carcinoma, phaeochromocytomas, and renal, pancreatic, and epidymal cysts Breast cancer, soft tissue sarcomas, osteosarcoma, brain tumours, adrenocortical cancer, Wilms’ tumour, and phyllodes tumour Breast cancer, thyroid cancer, endometrial cancer, facial trichelemmomas, acral keratoses, papillomatous papules, mucosal lesions

• Second-degree relatives are two steps away on the family tree, for example aunts, uncles, grandparents, nephews and nieces • Third-degree relatives are those that are three steps away on the family tree, for example great

Inheritance

40–80% risk of breast cancer over lifetime; 10–60% risk of ovarian cancer over a lifetime By age 60 years, 84% for cerebellar haemangioblastoma, 70% for retinal angioma, and 69% for renal cell carcinoma Estimated to be 73% in males and nearly 100% in females

Autosomal dominant

Mucocutaneous lesions are found in >90% of mutation carriers; 66% have breast or thyroid disease or both

Autosomal dominant

Autosomal dominant

Autosomal dominant

aunts and great uncles, great grandparents, cousins. It may not always be possible for the oncology nurse to gather an accurate and extended family

Hereditary cancer 433

history, however on referral to a genetics centre, specialist nurses and genetic counsellors can help the patient to explore their family history more fully. Box 16.1 lists factors in a family history that may lead to referral to a cancer genetics unit: Box 16.1 Factors in a family history that may lead to a referral to a cancer genetics unit. Adapted from Bancroft E., Ardern-Jones A. and Lynch E. (2006). Cancer genetics: the importance of obtaining a family history. Nursing Times 102, 28–29.20 1. Young age of onset, e.g. breast cancer under 40 years, bowel cancer under 50 years 2. Autosomal dominant pattern of inheritance (e.g. successive generations affected) 3. Multiple cases of cancer in one individual 4. The occurrence of more than one rare tumour in a family, e.g. sarcomas, brain tumours 5. The occurrence of the same cancer multiple times in an individual or cancers known to be related, e.g. breast and ovarian, bowel and uterine 6. Ashkenazi Jewish ancestry in a family with multiple cases of breast and/or ovarian cancer.

In the cancer genetics clinic, there are certain features that a counsellor will recognise as typical of an inherited cancer syndrome. For example, if several family members on either the maternal or paternal side have developed the same or related cancers, particularly involving two or three firstdegree relatives, then this pattern is highly suggestive of the presence of a cancer predisposition gene. Another important factor to consider when analysing a family pedigree is the age of onset; on average, the age of onset of inherited cancers is lower than that of sporadic cancers. It is important to remember that even in a family with an inherited predisposition, it is possible for some family members to develop cancer by chance alone (these are referred to as sporadic cases, or phenocopies). Verification of family history is important for accurate genetic counselling, Commonly, the histories that people report initially are inaccurate, and further research and collection of histological

reports are necessary. If family members have died, it is wise to collect copies of death certificates or medical records to establish the cause of death. The ages of family members and dates when the cancer was diagnosed in the family are essential. The collection of this family history information must be sensitively handled as family members have often experienced bereavement, and simply talking about past experiences may be profoundly distressing. The phenotypic appearance of the individual attending the clinic is also of great importance. It is therefore necessary to take note of any significant features that may suggest a known hereditary condition; for example, skin trichilemmomas and large head circumference, which can occur in Cowden’s syndrome. This rare syndrome may also predispose to the development of both breast and thyroid cancers.21 Through the counselling process it may be necessary to make estimates of environmental exposures such as sun exposure and smoking, as well as to clarify the ethnic background of the family members seeking counselling, as this may have an impact on cancer risk. For example, women of Ashkenazi Jewish origin who have developed breast cancer younger than 40 years of age have a higher chance of carrying an alteration in one of the breast cancer susceptibility genes, BRCA1 or BRCA2, than a woman from another ethnic group.22

What happens at an appointment at a cancer genetics clinic? It is normal for most genetic centres to send out a questionnaire before patients are seen in a genetics centre. This gives the centre the opportunity to verify the information where possible, and then for the families to be assessed before attending the clinic. In some clinics patients are telephoned by a genetic/nurse counsellor before attending a clinic, as they may be requested to get a relative’s death certificate or approach living relatives with cancer for consent so that the genetics team can access their medical records. However, it is not always possible to gather complete information about a family, especially in the UK which has a diverse range of cultures and changing family

434 The experience of treatment

structures. In some families, previous generations may have been lost as a result of war or disease or through immigration and loss of contact. The staff at the cancer genetics clinic will take this into account and will advise on information available.20 Once the appointment is made, the family may be discussed in a multidisciplinary meeting and then seen by one of the genetics team. It may be one of several appointments that the individual will have with the genetics team or simply a oneoff appointment, depending on the particular situation of the family. The family history is reviewed with the patient, and the risk of there being a genetic susceptibility to developing cancer is discussed. Issues around genetic testing may be raised if appropriate, and screening for the patient themselves and other at-risk family members is discussed. It is important for the genetic/nurse counsellor to explore psychological issues, as often individuals require support for bereavement and cancer anxiety. Further referral for ongoing counselling may be needed.5 If there are medical issues, such as the patient wishing to discuss prophylactic surgery, the patient should ideally be seen in a clinic where there are appropriate clinicians available to discuss medical management. For these people it is also important that there are nurse specialists or counsellors available to support patients.

Genetic counselling The term ‘genetic counselling’ has evolved over the years to include psychosocial issues that are paramount as part of the process of counselling. The complex process of genetic counselling addresses problems associated with diagnosis, risk assessment, and the explanation of all the possible options available to help with the burden associated with genetic risk. The essence of genetic counselling is to make known to the counsellee(s) the information about an inherited disorder that is of concern, and to help to evaluate the alternative options stemming from the many concerns that may be raised by the counsellee during the session. This may include advising the person seeking genetic counselling about the different

services (i.e. screening or support) that are available to both the patient and the family.5

The meaning and presentation of risk and screening issues Epidemiological studies of many human cancers have demonstrated a modest (two- or threefold) increase in risk of cancer amongst first-degree relatives of individuals with a similar cancer.23 Family members may well be advised to seek screening for these cancers; however, genetic cancer risk is multidimensional and hard to define. As well as the probability and consequence of a cancer developing, it is important for an individual to consider the possible implications of knowing about cancer risk and how that may impact on behaviour (for example, the decision to take preventive action or no action at all).24 McAllister suggests that for some individuals, beliefs about risk perception can form part of a process of coping and coming to terms with living with being ‘at risk’.25 This study, looking at families with hereditary non-polyposis colorectal cancer, found 28% of respondents said that they expressed fear and anxiety about their risk and appeared to be mixing up their experience of cancer in their family and their own risk of developing cancer. There is evidence that suggests that being identified as ‘at risk’, because of either genetic testing or pedigree analysis, may also have a negative effect upon psychological well-being, and individuals may be fearful and anxious about their risks of developing cancer.26,27 One of the most important reasons for identifying hereditary cancer is to enable family members who are not affected by cancer to seek preventive strategies for the future; that is, to seek screening, surveillance, or surgery. There is evidence to show that early detection may prevent the onset of metastatic cancer. In addition, by providing cancer-risk information it may be possible to facilitate informed choices of anti-cancer treatments or surveillance programmes. Referral patterns

Members of families with a high risk of cancer are referred to the regional genetics services that serve

Hereditary cancer 435

the UK. Within these units there are multidisciplinary teams including specialists in cancer genetics. Referrals are made by the general practitioner (GP), hospital doctors, or other health professionals. A government white paper has highlighted best practice for referral patterns,28 and the Human Genetics Commission also outlines best practice for genetic testing services.29 Thus the government has invested considerable sums of money into education and information to be made available for the public interest regarding genetics. Cancer genetics is becoming an increasingly important part of genetics services and has now become the largest single reason for referral to the regional genetics centres in the UK.

Personal account 16.1

Screening issues

who believe that a prevention programme is important. There is a need for evidence-based advice to be given to families seeking guidance with regard to screening programmes. Thus families with a high risk of developing cancer are guided by criteria derived from protocols advised by the National Institute for Health and Clinical Excellence (NICE).33 These guidelines are drawn from research projects that have been published in scientific journals.

Cancer-risk notification is fraught with ethical dilemmas. There is sometimes little more to offer the majority of ‘at-risk’ family members other than surveillance or lifestyle advice. Given the climate of present-day health care and rationing, the implications of cancer screening are controversial.30 Members of families with a known genetic condition are potentially engaged in everyday bioethical decision making,31 and there can be problems with disclosing information following a cancer genetics consultation to family members, particularly in relation to screening recommendations for their relatives. Individuals are recommended to share information, but it can be argued that is it unethical to recommend, for example, breast and ovarian screening, in the knowledge that the uptake of screening in certain countries where some of their kin live is not feasible due to limiting advances in health technology.

Screening As well as the psychological and social costs, screening is expensive and benefits are not proven for all the screening programmes. Genetic counsellors are involved in planning screening programmes for family members at risk of hereditary cancer, and a referral to a clinic for this purpose can be seen by some members of the medical profession to have little benefit to the patient. This may cause disruption and anxiety for people

The following is a personal account explaining how, in Iran, screening is only available privately, so if someone cannot afford to pay for it they do not have it arranged. Nancy who is from Iran illustrates this. She compares the health care system in Iran with that in England: They have it in Iran as well, but obviously it depends if somebody can afford it, they go and have it done. If they cannot afford it, they cannot have it done; it’s as simple as that. It’s not available for everybody. I am grateful that [screening in England] it’s available free for everybody. So no matter where you come from or what’s your material situation, you can afford to go and get screened.32

Personal account 16.2 The following is the personal account of a family member seeking screening for hereditary colon cancer: I think that, as a lot of people feel, that if you have somebody close to you . . . [that has developed cancer] you immediately start to worry . . . but it didn’t worry me unduly . . . until my mother’s sister died and I thought ‘no, all three sisters in the family, that is a bit too much’ . . . I thought I might be in line for it. . . . the thought of cancer frightens me . . . I had to press [my GP] very hard . . . and I had to go to another doctor . . . he had never written to the hospital. . . . I don’t think that he particularly wanted me to go to the hospital . . . I don’t have much confidence in that doctor.34 In fact, the patient referred to in this letter came from a high-risk hereditary non-polyposis colorectal cancer (HNPCC) family and colonoscopy screening is clearly recommended as a beneficial procedure with proven benefits.35

436 The experience of treatment

Recently, people have been divided into three different catogories with regard to cancer risk – high, moderate and low (or population) risk.33 This can be confusing for some people who feel that they have fallen into the wrong category. Most cancer genetic risk-prevention programmes include screening as a tool to detect early signs of cancer so that it may then be cured. Screening is planned in accordance with age and may need to be followed for long periods of time. There are concerns that the advances in genetic technology may result in more widespread knowledge of susceptibility, and that screening services will be offered to those at risk, without consideration of the consequences. The possible harm (for example, anxiety) that may arise from a screening test for any person may be very small in comparison with the potential harm from not offering screening, and screening may be life-saving by enabling treatment of a potentially fatal cancer. However, despite the wide publicity and optimism amongst the lay public regarding the benefits of screening, some families may have problems with their family doctors arranging a referral for appropriate screening. At this point in time, ovarian screening, prostate cancer screening, and mammography in the under 40–50-year age group are being evaluated by various research studies, which hope to provide an evidence base for future screening guidelines.

Diagnostic genetic testing Cancer genetic testing aims to identify an alteration in a known cancer predisposition gene. In the public health system, this commonly involves offering testing to an affected family member in order to maximise the chance of an alteration being found. Testing for a cancer-causing mutation may not find an alteration in the gene – the individual must be aware of this. This may be for several reasons, including the fact that modern technology is limited, the patient having the test may have developed cancer by chance, there is a mutation present in the gene that is being looked at but it has been missed, or that there is a mutation

present in a gene/genes yet to be identified. Testing families with HNPCC needs to start with microsatellite testing on the tumour sample as a first stage before testing the DNA. It may take a few months to complete the search for the gene alteration. Testing in the UK has improved as a result of NICE guidelines improving both genetic testing times and the quality of the genetic test. These improvements have only emerged in the last year or so, since 2006. If a mutation is found, this means that this is likely to be the reason for the development of the particular cancer in the individual concerned. This may have predictive implications for other cancers. This is hard for some families as the quote from Fiona below shows; she was unaffected and had had prophylactic mastectomies despite not knowing her genetic status, while her sister had an uninformative genetic test result:36 I think when your mother dies young we were quite young so you don’t think too much about it um and then when your father dies and cancer is becoming part of your life and then your sister gets it, even then I think I still put it down to it’s just a coincidence, we’re just extremely unlucky people, but for a third sister to get it you just think the odds are against us now, there’s obviously something genetic there.

The counselling process with the affected person informs the individual about the further cancer risks both to the person having the test and for their relatives. For example, the breast/ovarian cancer gene BRCA1 confers a high risk for contralateral breast cancer, as well as the development of both breast and ovarian cancer, and a small increased risk of other cancers. In a dominantly inherited condition there is always a 50/50 chance that all first-degree family members have a chance of inheriting the same mutation in the family. This may or may not cause concerns and worries for other family members. Counselling sessions for genetic testing may include several consultations with the individual, who may need to take time before undergoing such a test. Talking through all the implications with the multidisciplinary team members is important. The preparation time is described in Box 16.2.

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Box 16.2

Predictive genetic testing

In this case, a known mutation in the family has been identified and a person who has not developed cancer is seeking a test to know whether or not they carry this same mutation. Informed consent Full understanding of the implications of finding out whether or not the individual seeking testing carries the mutation in the family is required. Session 1 Here, the risks and benefits of the test and the current risk factors associated with becoming a known carrier of the disease are explained. This is important, as statistical evidence associated with gene penetrance does change. Informing the person about implications of undergoing genetic testing and explaining all the options that are available for them should they find that they are a carrier is important. Assessing that they have not been coerced into undergoing such a test, and exploring psychological risk factors are also aims of this first session. If they have a history of depression or suicidal ideation then it is essential that they have the opportunity to meet with a clinical psychologist for further support and assessment before undergoing testing. Leaflets are available via the Association of British Insurers (ABI) for patients considering testing (www.abi.org.uk). It is important to get to know the individual in this session, to listen to and understand their fears, and assess their support networks whether these are through their family or friends. Session 2 This involves further discussion regarding all the emotional implications surrounding such a test. Are there any anxieties about taking this test? This session should include time to establish a good relationship with the genetic counsellor, who will be there when they have their results. Part of the process is preparing for both a positive result and a negative result. Plans for either result may be mapped out on paper. This plan includes all the screening options and surgical options. When the person seeking the testing is confident and comfortable with all his or her information, a blood sample can be taken. If there is a known mutation in the family, the predictive test does not take very long (about 4 weeks). It is also important to discuss the fact if they do not carry the gene then there may be no need to continue with the screening that has been recommended unless there is a significant history on the other side of the family. Some people are distressed at the thought of not having screening in the future especially if they have been attending a screening clinic for many years. Also, there is evidence of survivor guilt if they are negative for the mutation in the family. This should all be explained, along with the fact that it is quite normal for individuals who are found to be positive for the gene to be upset for some days following the news. Studies have shown that over time the psychological impact of a positive result for some predictive tests is not detrimental to a person’s psychological state.37 The individual is encouraged to bring a friend or partner with them for their results. Session 3 Test results are given, and partners or a friend may or may not be present with them for their results. At this session arrangements are made for follow-up support, and the planned programme is arranged for screening or preventive surgery options. Patients who are found to be positive for the gene need careful follow-up over a period of time. Many people are very emotional and upset when told the news that they are a gene carrier, despite careful preparation. Research has shown that distress and anxiety reduce after a month.38 Carrier clinics for gene mutation carriers are offered in some areas, as well as support groups and education days.

Ethical issues surrounding genetic testing

Many of the ethical issues surrounding genetic testing concern confidentiality and the duties of the individuals sharing information with their family. For example, who should take the responsibility for informing other family members about

a possible genetic risk or a ‘positive’ genetic test, and is there a duty to do so? For some, the effect of informing others can be devastating.39 If the patient does not wish to warn relatives about cancer risk, does the problem then become one for the professional? In general, this important

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consideration related to the professional ethics of genetics is difficult if one assumes that genetic testing is always a ‘family affair’. Arguably, although it is assumed to be a family affair, the individual rights of the person seeking genetic counselling for him or herself need to be considered. After all, one brother or sister may wish to know and another may not wish to know, because of the fear of discrimination. The rights of an individual to decide to know or not are paramount.40 The Human Genetic Commission has been asked to advise ministers on the complex issues surrounding the rapid advances in genetics and genetic testing.29 This commission has a facilitative and advisory role, and aims to improve the level of informed debate about the implications of the development of human genetics. It incorporates a Genetic Discrimination Monitoring Group whose aim is to minimise discrimination for those people with genetic disorders. Family communication may differ between ethnic groups or those with different cultural backgrounds. Indeed, the culture of a given group may be very different from that of another culture. For example, in African-American culture, family sharing and a sense of spirituality are often highly valued, and decisions may be made collectively.41 This may differ from the ethic of many Europeans whose values are based on the notions of the individual and his right to choose for himself.42 Genetic testing is centred around helping individuals to decide whether or not the genetic test that they are considering is worth taking. The genetic counsellor aims to work with that individual to explore all the pros and cons of each decision as part of the pre-test informed consent process. On the one hand, establishing the test itself is a scientific process, and on the other hand, the level of predictive power that justifies the test is a professional ethical question.43 Assessing the test and its value includes a professional judgement about the clinical significance of any of the results that may affect not only the individual, but also the family. There is a probability component in estimating whether or not an individual who chooses to have a predictive cancer genetic test will develop cancer or not. Certainly, the knowledge that an individ-

ual may have inherited a cancer susceptibility gene provides important information. This information is of clinical significance as preventive procedures may reduce morbidity and mortality in a known gene carrier. It is as well to note that there is an element of probability and uncertainty in clinical advice given concerning many cancer genes. The main considerations attributable to predictive cancer genetic testing are the knowledge that probability does not equate with certainty, and that individuals who are otherwise healthy are faced with the knowledge of carrying a genetic mutation that they may or may not pass to their offspring with associated risk of developing cancer. This knowledge is linked in with modifying factors, which are not only genetic but also have environmental influences. For example, if a woman carries either of the two known breast cancer genes (BRCA1 or BRCA2), it is not certain that she will develop breast or ovarian cancer but merely that she has a cancer risk estimated from the latest gene penetrance studies.7 The examples below illustrates the fear and concern associated with a genetic test. Anna said: When I was asked if I would like to find out if I had the gene . . . I discussed it with my sisters . . . and I said my reaction is that I don’t want to know, and they said ‘I’d agree with you . . . I wouldn’t want to know either, because like what are you going to do . . . if you find out you’ve got the gene . . .?’.34

Penny felt: I am not sure [about genetic testing] . . . it is one of those things that I am trying not to think much about because I am not sure what my answer would be . . . I would be quite happy to have the test, if there is a fair chance that it was going to be negative . . .34

Prophylactic surgery Prophylactic surgery is an option for the treatment of individuals at a high risk of developing cancer. In certain areas of cancer risk management, surgery has an established preventive role. For example, in the treatment of patients with multiple endocrine neoplasia type-2 syndrome,

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prophylactic total thyroidectomy is advocated to prevent the development of medullary thyroid cancer. Prophylactic colectomy is normally advised for individuals who have familial adenomatous polyposis, as surgery aims to prevent the inevitable progression of colonic adenomas to invasive cancers.11 In conditions where the cancer risk is lower, such as inherited breast and ovarian cancer, surgery is offered as a management option rather than being recommended. As well as reducing ovarian cancer risk by as much as 96%,44 prophylactic oophorectomy has been demonstrated to reduce the risk of breast cancer by approximately half, depending on the woman’s age at surgery.45,46 There is also evidence that the reduction in risk of breast cancer from prophylactic breast surgery may be as high as 90%,47–49 although there is some concern that current information regarding residual breast and ovarian cancer risk may contain bias inherent to the way the studies are currently performed.49 The sensitivity and specificity of surveillance techniques can also play a role in decisions about surgery. While the risk of ovarian cancer in a woman with a BRCA1 or BRCA2 mutation may not be as high as the risk of breast cancer, there is not as much evidence to show that ovarian cancer surveillance is as effective at detecting early-stage ovarian cancer as mammography is with earlystage breast cancer. There may be women who therefore choose to pursue prophylactic oophorectomy for ovarian cancer risk reduction, while managing their breast cancer risk through regular surveillance. Although surgery offers high preventive rates for some of these inherited cancer syndromes, it is never without trauma, fear, and an impact on an individual’s life when they opt for what may be considered a ‘life-saving option’. The longterm follow-up of family members who have opted for surgery should continue, and the family history remains along with the continued concern for others in the family who may have already developed cancer. The cost of prophylactic surgery in psychological terms has yet to be fully studied and understood. A very recent quantitative study surveyed women who had had prophylactic surgery as well

as women who were at risk and had not undergone surgery. The majority of women reported satisfaction with bilateral prophylactic mastectomy and experienced psychosocial outcomes similar to women with similarly elevated breast cancer risk who did not undergo prophylactic mastectomy. This study suggests bilateral prophylactic mastectomy appears to neither positively nor negatively impact long-term psychosocial outcomes.50 Personal account 16.3 Susan (whose sister died at the age of 29 years, as did her mother and three sisters) said: Now that I am thirty-two . . . I am thinking . . . ‘oh well there is hope because I am going to have this mastectomy’ . . . so I pin all my hopes on that mastectomy . . . and if it means that I do not have two lumps around my body that didn’t work for me . . . [she could not breast feed her child], as far as I am concerned [they are] two big bombs waiting to go off . . . I can’t see another way . . . I wanted to have a baby before I died . . . I wanted to have that emotion . . . I could not face death without having a child . . . which is selfish because I was going to leave that child behind . . . I wasn’t going to wait for the cancer to get me . . . I was going to get the cancer before it got me . . .34

Cultural issues in genetic counselling The process of communication is at the core of genetic counselling. Genetic counselling encompasses issues including plans for continuing medical management, genetic testing, and how to communicate with other family members about genetics and risk. In all cases, such issues require sensitive handling; it is also important, however, to have an awareness of the individual’s ethnicity and culture and how it might influence reactions to these issues. Ethnicity and culture can affect virtually all aspects of genetic counselling, and from an ethical and moral perspective, the goal of providing equal access and quality of services for all individuals requires that health care professionals are sensitive, knowledgeable, and skilled in working with individuals from diverse cultures and ethnic communities.51

440 The experience of treatment

Beliefs and expectations concerning medical treatment and practitioners can influence how the patient perceives genetic counselling.52 Rapp53 and Weil54 have identified how religious and spiritual beliefs may affect how patients understand and respond and how they may have a major influence on the use of genetic tests and interventions. It is important that these beliefs are acknowledged and respected.55 If they are ignored, it may lead to the patient withdrawing, withholding information, feelings of anger or shame, or even failing to attend appointments and non-compliance.51 Family dynamics can play an important role in genetic counselling and decision making. Cultural experiences and expectations may influence decision making. Decisions relating to reproduction or screening may be perceived to include other family members. This involves a broad spectrum of cultural issues relating to family authority, cohesion and support, and/or the relationship of the individual and family to the social or religious community.56,57 Communication barriers extend beyond those involving non-fluency in English. Although the person’s first language may be English, they may be unfamiliar with the terms and concepts used in cancer genetics, Western medicine, and genetic counselling. Weil51 and Mittman et al.57 have also identified cultural differences in the degree of emotion expressed and self-revelation involved in communication with health care professionals.

The ‘culture of cancer’ and influence of the media The media’s influence on the culture of cancer is documented in the literature. Its depiction as ‘the killer disease’ provides a negative response. The language of warfare is regularly used in newspaper journals and on television programmes, fuelling anxiety for many people, especially those with a cancer risk. Cancer becomes a disease that personifies death itself. In this context, time is particularly needed in the complex process of cancer genetic counselling. The language of warfare is very often reflected in the language used by families discussing their cancer risk. The meta-

phoric personification of cancer as the ‘enemy’ is profound, and linked with images from the media and film world. For example: Cancer is such an awful illness and it still keeps evading every doctor, research scientist as to a cure, as to why it happens . . . it must be one hell of a disease . . . it reminds me of Dr Hannibal in The Silence of the Lambs, he was a psychopathic killer, who used his victims through their brains, he got to them through the way he spoke . . . I thought he was a very clever, very, very, clever guy . . . and that is how I feel about cancer, it is clever, it is a smart cookie . . .34

The cancer nurse is well suited to deconstructing and understanding stories and myths long believed by the devastated families with inherited cancers. Telling the story, listening to the story, and empathising and understanding that cancer is a complicated illness is important. Lay people very often misinterpret the metastatic cancer process and confuse metastatic tumours with new primary tumours. In this way, individuals fear for themselves, believing that they are in line for many different types of cancer. Explanation of this process may decrease anxiety for some family members. Understanding the disease, the treatments, and the illness process is important. Some family members have never had the chance to do this and therefore feel a sense of confusion: they ‘haven’t liked to ask Dad’ about the real truth about a family member’s illness. The following in an extract from Lisa’s view of her genetic risk: I think [my grandmother’s death] never really was explained to me . . . I just knew she was very ill and it was a cancer . . . but exactly what and why I didn’t know . . . I didn’t really register anything, that there might be a genetic link . . . so what can you do about it . . .?34

This example highlights the fact that some people are unaware of the cancer development in another family member. Lisa lives in a family with a dominantly inherited colon cancer gene. Her mother is terrified of developing the disease that killed her own mother and her two sisters. Cancer remains confusing to her and the genetic link has been her mother’s prime concern. Screening for

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colon cancer is recognised as a positive management strategy for hereditary colon cancer risk.11 Family dynamics are very important, and one should establish with the family involved in the genetic counselling process the social relationships within the family. This is helpful to both the counsellor and the family member, as other members of the family may seek genetic counselling. Social relationships can be drawn in the format of a genogram (a family tree that shows the social relationship patterns in the family). It is essential to provide a confidential place of knowledge giving. All family members visiting the cancer genetics clinic are assured of their privacy with regard to the genetic counselling process. Any information about a cancer diagnosis or medical matter concerning a person who is alive should be given with written consent from the individual to whom the information pertains.

Psychological morbidity It is important to be aware of any psychopathology that may occur as part of the experience of belonging to a family with a high cancer risk. The many bereavements in the family, and in particular the loss of a parent, may make it difficult for people to accept their own personal cancer risks. Unresolved bereavement, cancerphobia, or excessive anxiety states all need expert assessment by a clinical psychologist.

over a certain financial limit.58 However, if a person who has a positive result following a Huntingdon’s predictive genetic test seeks insurance over a certain threshold, they are bound to inform the insurance company about their results.

New developments Preimplantation genetic diagnosis (PGD) involves in vitro fertilisation (IVF) and embryo biopsy to prevent pregnancies affected with serious lifethreatening diseases. This technique has been used in the past mainly for hereditary disorders causing lifelong disability or death in early life, or for cases where there is no possible option of treatment. It has been used for cancer conditions such as familial adenomatous polyposis coli (FAP) and multiple endocrine neoplasia. More recently there has been much debate over the licence granted by the Human Fertilisation and Embryology Authority (HFEA) to use PGD in the UK for ‘lower penetrance’ mutations in adult-onset hereditary breast cancer (BRCA) and hereditary non-polyposis colorectal cancer (HNPCC) adult-onset families where individuals do not always develop the disease even if the mutation is inherited. A recent qualitative study debated the ethical and social issues with BRCA patients,59 and, as a BRCA1 carrier and past medical doctor involved in PGD, the author Bryan recommends in her chapter on PGD that families carefully weigh the wide range of views and the options available.60

Discrimination and insurance Conclusions Fear of discrimination may exist for people known to be at high risk of developing cancer. The ABI Code of Practice on Genetic Testing regulates the behaviour of insurance companies who belong to the ABI when dealing with any genetic test information disclosed to them by an individual applying for insurance. Insurers are also bound by the Moratorium, agreed with the government in 1999, and the Concordat and Moratorium of 2005. This moratorium has been extended until 2011 and sets down that no predictive genetic test results be requested by ABI insurance companies unless the patient is requesting insurance cover

Cancer genetics is a developing specialty, and oncology nurses may well be involved with caring for patients who have developed hereditary cancer. They may need to refer patients on to the cancer genetic services if needed. Nurses who choose to work in cancer genetic clinics need to understand the state of flux of knowledge, along with the many psychosocial implications that affect not only the person seeking the counselling but also other family members. This knowledge is both predictive and prognostic, and has many implications for families.

442 The experience of treatment

The language of cancer genetics needs to be explained to family members seeking counselling. The changing and cutting-edge nature of this specialty is both exciting and symbolic of the complexities associated with a rapidly developing technological age. These developments are interlinked with cost-cutting budgets and constraints in practice as well. Scientific discoveries leading to improving cancer care need careful consideration and understanding from a holistic perspective. The scientific discoveries are moving at a great pace, and by understanding the molecular basis of the mechanics of the genetic changes, there is hope for further discoveries leading to new treatments, useful screening, and perhaps a cure for inherited cancer. Already certain patients are being offered chemotherapy regimes in the research setting to help manage their condition, after suggestion that cells carrying mutations in cancer predisposition genes might be sensitive to inhibition of an enzyme called Poly (ADP-ribose) polymerase.61 As this is a fast-moving field, the absolute risk figures can change with time as more knowledge becomes available. Also, it may not be long before pathology diagnostics make it clear at the moment of diagnosis whether or not a cancer patient is likely to be a gene mutation carrier. This new knowledge will greatly impact on the clinicians who are informing patients about their cancer diagnosis.62 If, however, predictions for improved diagnosis are borne out, then it is essential to process the knowledge in human terms. Understanding cancer risk is complex, and each individual has their way of believing the facts and relating to them in meaningful ways according to experience. Cancer nurses need to have the education to both support and provide information for those patients and their families who have developed cancer as the result of an inherited condition.

References 1. Eeles R.A., Ponder B.A.J., Easton D.F. and Horwich A. (eds.) Genetic Predisposition to Cancer, 2nd edition. London: Chapman and Hall. 2. Hodgson S.V., Foulkes W., Eng C. and Maher E. (eds.) (2006). A Practical Guide to Human Cancer Genetics, 3rd edition. Cambridge: Cambridge University Press.

3. Stein L.D. (2004). Human genome: end of the beginning. Nature 431, 915–916. 4. Suzuki D.T., Griffiths A.J.F., Miller J.H. and Lewontin R.C. (1986). An Introduction to Genetic Analysis, 3rd edition. New York: W.H. Freeman. 5. Schneider K. (2002). Counseling about Cancer: Strategies for Genetic Counseling, 2nd edition. New York: John Wiley and Sons. 6. Jones S. and van Loon B. (1993). Genetics for Beginners. Cambridge: Icon Books. 7. Ford D., Easton D.F., Stratton M.R. et al. (1998). Genetic heterogeneity and penetrance analysis of the BRCA1 and BRCA2 genes in breast cancer families. American Journal of Human Genetics 62, 676–689. 8. Easton D. (2004). From families to chromosomes: genetic linkage, and other methods for finding cancer predisposition genes. In Eeles R.A., Ponder B.A.J., Easton D.F. and Horwich A. (eds.) Genetic Predisposition to Cancer, 2nd edition. London: Chapman and Hall, pp. 21–40. 9. Eng C. and Ponder B. (2004). Multiple endocrine neoplasia type 2. In Eeles R.A., Ponder B.A.J., Easton D.F. and Horwich A. (eds.) Genetic Predisposition to Cancer, 2nd edition. London: Chapman and Hall, pp. 105– 118. 10. Knudson A.G. (1985). Hereditary cancer, oncogenes and antioncogenes. Cancer Research 45, 1437–1443. 11. Hodgson S. and Murday V. (2004). Screening and management of familial colon cancer. In Eeles R.A., Ponder B.A.J., Easton D.F. and Horwich A. (eds.) Genetic Predisposition to Cancer, 2nd edition. London: Chapman and Hall, pp. 331–338. 12. Anonymous (2001). News. European Journal of Cancer Care 10, 228–233. 13. Lakhani S.R., van de Vijver M.J., Jacquemier J. et al. (2002). The pathology of familial breast cancer: predictive value of immunohistochemical markers estrogen receptor, progesterone receptor, HER-2, and p53 in patients with mutations in BRCA1 and BRCA2. Journal of Clinical Oncology 20, 3752–3753. 14. Armes J.E. and Venter D.J. (2002). The pathology of inherited breast cancer. Pathology 34, 309–314. 15. Møller P., Borg A., Evans D.G. et al. (2002) Survival in prospectively ascertained familial breast cancer: analysis of a series stratified by tumour characteristics, BRCA mutations and oophorectomy. International Journal of Cancer 20, 555–559. 16. Foulkes W.D., Stefansson I.M., Chappuis P.O. et al. (2003). Germline BRCA1 mutations and a basal epithelial phenotype in breast cancer. Journal of the National Cancer Institute 95, 1482–1485. 17. Office for National Statistics. www.statistics.gov.uk/CCI/ nugget.asp?ID=915&Pos=1&ColRank=1&Rank=294 (accessed 6 September 2007).

Hereditary cancer 443 18. McKusick V. (1998). Mendelian Inheritance in Man. Baltimore, MA: Johns Hopkins University Press. 19. Firth H. and Hurst J. (2005). Oxford Desk Reference Clinical Genetics. Oxford: Oxford University Press. 20. Bancroft E., Ardern-Jones A. and Lynch E. (2006). Cancer genetics: the importance of obtaining a family history. Nursing Times 102, 28–29. 21. Eng C. (1998). Genetics of Cowden syndrome: through the looking glass of oncology. International Journal of Oncology 12, 701–710. 22. Abeliovich D., Kadouri L., Lerer I. et al. (1997). The founder mutations in 185delAG and 5382insC in BRCA1 and 617delT in BRCA2 appear in 60% of ovarian cancer and 30% of early-onset breast cancer patients among Ashkenazi women. American Journal of Human Genetics 60, 505–514. 23. Easton D.E. and Peto J. (1990). The contribution of inherited predisposition to cancer incidence. Cancer Surveys 9, 395–416. 24. Evers-Kiebooms G., Cassiman J.-J., van den Berghe H. and d’Ydewalle G. (eds.) (1987). Genetic Risk, Risk Perception and Decision Making. New York: Liss. 25. McAllister M. (2003). Personal theories of inheritance, coping strategies, risk perception and engagement in hereditary non-polyposis colon cancer families offered genetic testing. Clinical Genetics 64, 179–189. 26. Watson M., Lloyd S., Davidson J. et al. (1999). The impact of genetic counselling on risk perception and mental health in women with a family history of breast cancer. British Journal of Cancer 79, 868–874. 27. Appleton S., Fry A., Rees G., Rush R. and Cull A. (2000). Psychological effects of living with an increased risk of breast cancer: An exploratory study using telephone focus groups. Psycho-oncology 9, 511–521. 28. Department of Health. (2003). Our Inheritance, Our Future. London: Department of Health. 29. Human Genetics Commission. (2003). Genes Direct. Ensuring the Effective Oversight of Genetic Tests Directly to the Public. London: Human Genetics Commission. 30. Stewart-Brown S. and Farmer A. (1997). Screening could seriously damage your health. British Medical Journal 314, 533–534. 31. Featherstone K., Atkinson P., Bharadwaj A. and Clarke A.J. (2006). Risky Relations: Family and Kinship in the Era of New Genetics. Oxford: Berg. 32. Thomas S.G. (2005). Women’s Experiences of Living with an Inherited Breast/Ovarian Cancer Family History: Stories from Different Ethnic Groups. MSc thesis, Kings College, London. 33. National Institute for Health and Clinical Excellence. (2006). Clinical Guidance: Familial Breast Cancer: The Classification and Care of Women at Risk of Familial Breast Cancer in Primary, Secondary and Tertiary Care (partial

update of CG14). London: National Institute for Health and Clinical Excellence. 34. Ardern-Jones A.T. (1997). Living with a Cancer Legacy – The Experience of Hereditary Cancer in the Family. MSc thesis, University of London, Institute of Cancer Research. 35. Vasen H.F.A., Mecklin J.-P., Meera-Khan P. et al. (1991). The International Collaborative Group on Hereditary Non-Polyposis Colorectal Cancer (ICG-HNPCC). Diseases of the Colon and Rectum 34, 424–425. 36. Ardern-Jones A.T., Kenen R., Lynch E., Doherty R. and Eeles R. (2007). Is no news good news. European Journal of Cancer Care (in the press). 37. Kash K., Dabney M. and Boolbol S. (2004). Psychological issues in cancer genetics. In Eeles R.A., Ponder B.A.J., Easton D.F. and Horwich A. (eds.) Genetic Predisposition to Cancer, 2nd edition. London: Chapman and Hall, pp. 404–413. 38. Reichelt J.G., Heimdal K., Møller P. and Dahl A.A. (2004). BRCA1 testing with definitive results: a prospective study of psychological distress in a large clinic-based sample. Familial Cancer 3, 21–28. 38. Foster C., Evans D.G., Eeles R. et al. (2002). Predictive testing for BRCA1/2: attributes, risk perception and management in a multi-centre cohort. British Journal of Cancer 86, 1209–1216. 39. Hallowell N., Foster C., Eeles R., Ardern-Jones A. and Watson M. (2004). Accommodating risk: responses to BRCA1/2 genetic testing of women who have had cancer. Social Science and Medicine 59, 553–565. 40. Clarke A., Richards M., Kerzin-Storrar et al. (2005). Genetic professioinals’ reports of nondisclosure of genetic risk information within families. European Journal of Human Genetics 13, 556–562. 41. Martin J.N., Hecht M.L. and Larkey L.K. (1994). Conversational improvement strategies for interethnic communication: African American and European American perspectives. 61 Communication Monographs 236, 353– 372. 42. Lerman C., Peshkin M.S., Hughes C. and Isaacs M.D. (1998). Family disclosure in genetic testing for cancer susceptibility: determinants and consequences. Journal of Health Care, Law and Policy 1, 353–372. 43. Geller L.N., Alper J.S., Billings P.R., Barash C.L., Becwith J. and Natowicz M. (1996). Individual family and societal dimensions of genetic discrimination: a case study analysis. Science and Engineering Ethics 2, 71–88. 44. Olopade O. and Artioli G. (2004). Efficacy of risk-reducing salpingo-oophorectomy in women with BRCA-1 and BRCA-2 mutations. The Breast Journal 10(suppl. 1), S5–S9. 45. Rebbeck T.R., Lynch H.T., Neuhausen S.L. et al. (2002). The Prevention and Observation of Surgical End Points

444 The experience of treatment Study Group: prophylactic oophorectomy in carriers of BRCA1 or BRCA2 mutations. New England Journal of Medicine 346, 1616–1622. 46. Hartmann L.C., Schaid D.J., Woods J.E. et al. (1999). Efficacy of bilateral prophylactic mastectomy in women with a family history of breast cancer. New England Journal of Medicine 340, 77–84. 47. Rebbeck T.R., Friebel T., Lynch H.T. et al. (2004). Bilateral prophylactic mastectomy reduces breast cancer risk in BRCA1 and BRCA2 mutation carriers: The PROSE study group. Journal of Clinical Oncology 22, 1055–1062. 48. Meijers-Heijboer H., van Geel B., van Putten W.L.J. et al. (2001). Breast cancer after prophylactic bilateral mastectomy in women with a BRCA1 or BRCA2 mutation. New England Journal of Medicine 345, 159–164. 49. Klaren H.M., van’t Veer L.J., van Leeuwen M.A. et al. (2003). Commentary: Potential for bias in studies on efficacy of prophylactic surgery for BRCA1 and BRCA2 mutation. Journal of the National Cancer Institute 95, 941–947. 50. Geiger A.M., Nekhlyudov L., Herrington L.J. et al. (2007). Quality of life after bilateral prophylactic mastectomy. Annals of Surgical Oncology 14, 686–694. 51. Weil J. (2001). Multicultural education and genetic counseling. Clinical Genetics 59, 143–149. 52. Greb A. (1998). Multiculturalism and the practice of genetic counseling. In Baker D.L., Schuette J.L., Uhlmann W.R. (eds.) A Guide to Genetic Counseling. New York: Wiley-Liss, pp. 171–198. 53. Rapp R. (1999) Testing Women, Testing the Fetus: The Social Impact of Amniocentesis in America. New York: Routledge.

54. Weil J. (1991). Mothers’ postcounseling beliefs about the causes of their children’s genetic disorders. American Journal of Human Genetics 48, 145–153. 55. Cohen L.H., Fine B.A. and Pergament E. (1998). An assessment of ethnocultural beliefs regarding the causes of birth defects and genetic disorders. Journal of Genetic Counseling 7, 15–29. 56. Wang V.O. (2001). Multicultural genetic counselling: then, now, and in the 21st century. American Journal of Medical Genetics 106, 208–215. 57. Mittman I., Crombleholme W.R., Green J.R. and Golbus M.S. (1998). Reproductive genetic counseling to AsianPacific and Latin American immigrants. Journal of Genetic Counseling 7, 49–70. 58. Department of Health (2005). Genetics and Insurance Committee, Fourth Report from January 2005 to December 2005. London: Stationery Office. 59. Menon U., Harper J., Sharma A. et al. (2007). Views of BRCA gene mutation carriers on preimplantation genetic diagnosis as a reproductive option for hereditary breast and ovarian cancer. Human Reproduction 22, 1573–1577. 60. Bryan E. (2007). Afterward. In Bryan E. Singing the Life. London: Vermillion, pp. 278–296. 61. McCabe N., Lord C.J., Tutt A.N. et al. (2005). BRCA2deficient CAPAN-1 cells are extremely sensitive to the inhibition of Poly (ADP-Ribose) polymerase: an issue of potency. Cancer Biology and Therapy 4, 934– 936. 62. Scott R. (2006). Future Implications for Genetic Testing. Oral presentation at IMPACT and AIDIT conference, Szczecin, Poland, 28–30 November, 2006.

Part 4

The Management of Cancer-related Problems

446 The management of cancer-related problems

Introduction Cancer causes a large range of difficult and distressing problems, as a result of either the disease process itself, or its treatment. In the preceding section on ‘The Experience of Treatment’, problems associated with treatment are identified and nursing strategies for managing these examined. This section focuses more directly on those problems, which are primarily (although not exclusively) the result of the disease process. The problems and difficulties that often accompany cancer cannot be neatly divided into those resulting from treatment and those arising from the disease itself. These are not mutually exclusive; therefore a rather arbitrary distinction is made here. Several common cancer-related problems have been identified, however, and are explored with particular reference to the contribution that nursing could make to their control or management. A departure from the traditional notion of symptom management is made, and a more radical and person-centred approach is proposed. Symptom management has been dominated by the successes achieved in cancer pain control using powerful drugs. This perhaps unintentionally set a path for the construction of care, which has placed heavy emphasis on a biomedical model of management, and the search for new and better drugs first for pain, and then for other symptoms common in cancer. This has led to the orientation of care around the ‘relief’ of the symptom experienced, and the neglect of other equally important aspects, such as suffering, distress, and ability to function independently. The limitations of this model of ‘symptom control’ are well rehearsed in the literature, and surround the biomedical relationship to ‘the body’ since this: • regards the body as an external object to the enquiries that yield knowledge of it • assumes that the practitioner is in control of the body of the ‘patient’, and diagnosis and treatment therefore requires them to be subordinate to the practitioner • deals with malfunctioning organs and related symptoms and not the ‘body’, which constitutes the actual person.1,2

The assumption that symptoms are reflections of disordered bodily processes, where the physician’s task is to decode patients’ descriptions of these in order to diagnose disease, is inadequate. Instead, a meaning-centred approach has been proposed,3,4 which seeks to access an individual’s interpretation of their illness and to assist them to construct new understanding of their illness. In this context, therefore, the term ‘symptom’ is highly problematic because of the assumption that this is universally defined and can be managed beyond the person by the health carer, with little reference to social or cultural influences. It also inherently excludes the person’s own narrative and personal meanings from the therapeutic process. The terms ‘problem’ and ‘need’ are preferable, since these suggest something that is difficult to deal with or understand. The power for action and ownership of these, however, remains with the person experiencing the problem. Looked at in this way, it is possible to see that as health carers we have no right to ‘manage’ these problems, only to assist in their containment, and both the sufferer and health carer have a mutual need to understand them:5 There is more to what people experience and know than they are able to express and we are able to hear.6

Problems associated with cancer and its treatment may be viewed both positively and negatively. Where a problem provides legitimisation to rest or temporarily to cease demanding activities, it may be interpreted as beneficial. More commonly it is interpreted as a sign of disease progression, failure of treatment, or imminent death. The meanings attributed to cancer-related symptoms and how people respond to and cope with problems are unique. These are influenced by an individual’s life history and the wider culture in which understanding of illness develops.7,8 Gender, personality traits, health beliefs, socio-economic status, environmental factors, and health carers themselves are all potent in either exacerbating or containing the problems that result from cancer.9 This implies that health carers must disentangle what is ‘really going on’ from a person’s account of their problem and any distress or difficulty

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associated with it. Their experience is of only secondary importance within the biomedical process of naming a symptom. Practitioners who use such a reductionist approach may respond to complex situations by applying a diagnosis based upon professional knowledge, discarding the subjective expressions of the person experiencing it since they do not ‘fit’ the diagnostic picture.10 Nurses have a tremendous contribution to make in helping people to articulate and interpret their problems and through this become better at managing them for themselves. Nurses’ expertise lies not in telling people what ails them, but in working alongside them to clarify the totality of their experience. Even when cure is not possible, understanding the meaning problems hold for an individual can be a powerful source of support and comfort. In this section, expert nurses have set out to articulate a way of working with people who have cancer in order to assist them in managing their problems. Many common problems are discussed. Some, such as pain, compromised nutrition, wounds, and the risk of infection, have been widely documented and researched. Others, such as breathlessness, ascites, confusion, and lymphoedema, have received less attention. The section begins its consideration of the clinical management of cancer-related problems by focusing on nursing’s contribution to the management of cancer pain. As one of the most commonly associated symptoms of cancer, it is not surprising that pain is often one of the most feared, and perhaps the most catastrophised, of all cancer symptoms. Despite the considerable attention paid by health care professionals to this phe-

nomenon, pain continues to be inadequately controlled.

References 1. Lynon M.L. and Barbalet J.M. (1994). Society’s body: emotion and the ‘somatization’ of social theory. In Csordas T.J. (ed.) Embodiment and Experience. Cambridge: Cambridge University Press. 2. Corner J. and Dunlop R. (1997). New approaches to care. In Clark D., Ahmedzai S. and Hockley J. (eds.) New Themes in Palliative Care. Milton Keynes: Open University Press. 3. Cassel E.J. (1982). The nature of suffering and the goals of medicine. New England Journal of Medicine 306, 639–645. 4. Good B.J. and DelVecchio Good M.J. (1980). The meaning of symptoms – a cultural hermeneutic model for clinical practice. In Eisenberg I. and Kleinman A. (eds.) The Relevance of Social Science for Medicine. Dordrecht: Reidel. 5. Corner J. (2004). Working with difficult symptoms. In Payne S., Seymour J. and Ingleton C. (eds.) Palliative Care Nursing. Maidenhead, Berkshire: Open University Press. 6. Halldorsdottir S. and Hamrin E. (1995). Experiencing existential changes: the lived experience of having cancer. Cancer Nursing 19, 29–36. 7. Kleinman A. (1988). The Illness Narratives: Suffering, Healing and the Human Condition. New York: Basic Books. 8. Benner P. and Wrubel J. (1989). The Primacy of Caring. Stress and Coping in Health and Illness. Menlo Park, CA: Addison-Wesley. 9. Vessey J. and Richardson B. (1993). A holistic approach to symptom assessment and intervention. Holistic Nursing Practice 7, 13–21. 10. Schön D. (1983). The Reflective Practitioner. London: Maurice Temple Smith.

CHAPTER SEVENTEEN

Pain Meinir Krishnasamy

Evidence indicates that half of all patients who experience cancer pain receive inadequate relief, even though research suggests that it is possible to relieve 80–90% of cancer pain.1–3 Pain is often the primary reason for seeking medical attention. For the individual subsequently diagnosed with cancer, it becomes a potent symptom, signifying the presence of disease or intimating its progression. Cancer, pain, and death may consequently become fused in the mind of the individual. Because of this, pain management will only be effective if a patient-centred approach to care is embraced by health professionals.4 Unfortunately, there is little evidence to suggest that cancer pain management is either patient centred or holistic.5 The World Health Organization promotes the concept of ‘total pain’,6 which acknowledges that it has physical, emotional, social, and spiritual components.7 Without attention to each of these facets of the pain experience, patient-centred care will continue to be an anomaly, and the statistics for unrelieved pain are unlikely to improve. As long ago as 1979, McCaffrey stated that ‘everything written or said about pain is worthless in the hands of a practitioner who doubts that a patient has pain’.7 The patient, she asserts, is ‘the only authority about the pain he experiences’. An acceptance of pain, when reported by individuals, irrespective of whether or not there is verifiable tissue damage, is therefore fundamental to effective pain management.8

Pain is deeply personal – neither solely shaped nor confined by a biological reality.5 It is a complex biocultural event and, as such, one of nursing’s greatest potential contributions to pain management is to facilitate the expression of each individual’s experience of pain.9

Managing cancer pain Evidence-based clinical guidelines set out essential aspects of effective pain management,10 and yet in reality these recommendations are only partly adopted in practice.11 Some of the key recommendations emphasised in the guidelines include: pain intensity must be quantified, pain must be adopted as an organisational priority, pain assessment must be standardised across the organisation, selected pharmacological and non-pharmacological interventions should be used, and minimum standards for clinicians’ pain assessment skills should be established.10,12 The aims and principles of cancer pain management are to: • recognise and promptly assess pain in patients with cancer • identify psychological and spiritual influences on pain perception and management • alleviate pain at night, at rest, and on movement

450 The management of cancer-related problems

• maximise independence and possible quality of life • address and thus relieve current and future fears about pain • provide support and encouragement for family members and friends and professional caregivers • invite participation of the patient, family, and/ or friends • adopt a collaborative, multidisciplinary approach • design unique analgesic regimes tailored to each patient’s needs and tolerance • regularly follow up the outcome • refer early to specialist services if pain control is not achieved.13 Without comprehensive assessment taking account of the many interdependent facets of pain it is unlikely that the principles outlined above will be met. Several pain-assessment instruments are now widely available, and evidence indicates that no one approach consistently shows greater sensitivity than others in their ability to detect changes in pain.14 The core elements of cancer pain assessment include questions around: • intensity – how severe is the pain? • character – how would you describe your pain? • location – where is your pain? Does your pain go anywhere else? • timing – when does your pain occur? • associated factors – what makes your pain worse or better? • implications of pain – how does this pain affect your daily living? An awareness of misconceptions that may hamper the process of assessment will facilitate effective nursing management. Some common misperceptions about pain management are that: • real pain has an identifiable, physical cause • psychogenic pain (i.e. one better understood through the language of psychology rather than

•

• • • •

physiology) does not really hurt and may even be comparable to malingering members of the health care team are capable of making accurate inferences about the nature, severity, and existence of an individual’s pain, based on professional knowledge and the patient’s behavioural and physiological expressions of the pain the severity and duration of pain can be predicted by the nature of the cancer and the cause and location of the pain patients should be encouraged to have a high tolerance for pain patients in severe pain always look distressed pain can be understood in isolation solely as a facet of the cancer diagnosis.8,15–17

Box 17.1 Some factors affecting an individual’s perception of pain5,7,15,17 • • • • • • • • • • • • •

Fatigue Insomnia Discomfort Anxiety Depression Anger Fear Sadness Boredom Isolation Withdrawal Loneliness Perceptions of the significance of the pain and its meaning • Cultural identity

• Cultural norms and expectations of pain expression and behaviour • Religious or spiritual beliefs • Familial support • Social support network • Perceptions of self • Altered self-image and self-esteem • Loss of income • Professional expectations of causes of pain behaviour • Professional expectations of pain behaviour • Fear of being on ‘a collision course with death’

Traditionally, medical management had involved identification of a relationship between pain and a noxious stimulus or abnormal neurophysiological activity.7 When a cause for the pain is found, the doctor explains to the patient why he experiences pain, and prescribes ‘appropriate’ analgesia. However, in the light of the factors affecting perception of pain, administering analgesia in isolation is clearly insufficient if pain relief is to be effective.

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What happens when no cause for an individual’s pain can be found? For many in this situation, their experience is left unverified and may ultimately result in stigmatisation or rejection by professionals, family, and friends. Exploring what pain means to the person experiencing it, and attempting to understand it within the context of social and cultural characteristics, is a means of overcoming the difficulty of identifying a cause. Unfortunately, there is currently little evidence of nurses’ ability to enter into such profoundly therapeutic relationships with people in pain. An appreciation of pain pathways and analgesic regimes (described later in this chapter) is central to effective nursing care. This may be especially important when complex pain syndromes such as bone and neuropathic pain impact on an individual’s quality of life. However, nursing’s critical contribution to cancer pain management will only be realised as we begin to nurture the therapeutic skills necessary to help others to articulate the experience of illness, as we begin to understand and work with what we are told about pain. Nevertheless, this is notoriously difficult as pain, like so many other symptoms discussed in this chapter, is deeply resistant to simple expression in everyday language or speech.3 How many times have you been told, ‘I just can’t explain what it feels like’ or ‘I know it sounds stupid but I just can’t point to where it is’? As health care professionals, we may compound the unspeakable nature of pain, demanding acquiescence in an objective rhetoric so that symptoms may be validated, and the ‘right’ to help for them is justified.18 Nurses are ideally placed to redress this bias. By directing assessment at the person and not the pain, we are likely to be effective in a way that has previously been unattainable (see Care strategy 17.1).

An overview of analgesic drugs The World Health Organisation has developed a guide for the selection of analgesic drugs to manage cancer pain.6 These steps, commonly referred to as the ‘three-step analgesic ladder’, have become the mainstay of pharmacological management of mild, moderate, and severe cancer pain (see Box 17.2).19

Care strategy 17.1 Working with an individual – ‘I’m much more than just a cancer patient’ Valuable questions to ask to try and evaluate a patient’s pain include: • When did you first notice you were ill? • How have things been since you were told about the cancer? • How have things been with and for your family or friends? • What was happening in your life when the cancer was diagnosed? • What plans or life events has it disrupted or destroyed? • Did you experience any pain when you were first ill? • When did you first experience any pain? • Is the pain the same now or has it changed? • What makes it worse and what makes it better? • What are your expectations, fears, and hopes for the future? • What does the pain mean to you?

Unfortunately, there are many unwanted sideeffects of these medications. The most prevalent are nausea, vomiting, and constipation. For those who are eating well or who have previously been taking opioids, an anti-emetic is less likely to be necessary. For some, nausea is only a problem for the first few days following initial prescription or while doses are being increased incrementally until pain control is achieved, while others may require indefinite anti-emetic cover. Nursing approaches to managing nausea and vomiting are discussed later in this chapter. Aperients should always be prescribed with opioids unless specific complications such as bowel obstruction contraindicate this. Combining a softening laxative (e.g. lactulose) with a stimulant (e.g. senna) may often be more effective.23 Drowsiness, urinary retention, confusion, hallucinations, itching, and bronchospasm have also been documented as side-effects of opioid medication.13 Respiratory depression is not a problem when using strong opioids regularly by mouth to relieve pain. Indeed, circumstantial evidence suggests that the competent use of morphine to relieve pain facilitates better rest, dietary intake, and mobility, thus prolonging lives.17 Addiction

452 The management of cancer-related problems

Box 17.2

The three-step analgesic ladder

Mild pain Drugs of choice – non-narcotics: • paracetamol, aspirin, or non-steroidal anti-inflammatory drugs (NSAIDs) • combining paracetamol and NSAIDs is more effective than using either alone. Moderate pain Drugs of choice – weak opioids: • dextropropoxyphene (Distalgesic), codeine, or dihydrocodeine. Severe pain Drugs of choice – strong opioids: • morphine, hydromorphone, oxycodone methadone, fentanyl (transdermal patch - long acting, subcutaneous injections (very short action time; fentanyl lozenges) • combining two strong opioids or mixing a weak and strong opioid is not advisable. Remember that most patients with cancer require strong opioids. Adjuvant drugs/co-analgesics: • corticosteroids for nerve and bone pain and for painful hepatomegaly and headache from raised intracranial pressure • antidepressants, anti-arrhythmic, and anticonvulsant drugs can all be used to alleviate nerve pain • antispasmodics for reduction of muscle spasm • biphosphonates for relief of bone pain • antibiotics or antirheumatic drugs for alleviation of coexisting pathologies.6,19–22

is not a problem when morphine is used to treat opioid-responsive pain,17 and this should not be used as a reason to withhold opioids from patients with cancer.24 Physical dependence, manifested as irritability, chills, sweating, abdominal pain, diarrhoea, and anxiety, if opioids are stopped suddenly, should not be confused with psychological addiction.19 For some patients, cancer pain increases with time and seems resistant to increasing doses of analgesia. This may be due to progression of the disease or to a phenomenon called ‘pain windup’, where patients require increasing doses of

opioids over a short period of time, or have rapidly increasing pain over a short period of time.26 The cause of pain wind-up is usually inadequate treatment of pain or misdiagnosis of neuropathic pain. It can usually be prevented by comprehensive pain assessment and complex analgesic regimens, but it will not be relieved by opioid prescription.26 Surgery, radiotherapy, nerve blocks, transcutaneous nerve stimulation (TENS), heat, cold, and cordotomy (although only occasionally used) are also effective methods of pain relief.17 Increasing attention is being given to interventions that rely more on psychological and cultural influences on pain.27 Expert opinion and patient selfreport attest to their benefit, but there is limited level I (systematic review) or II (randomised controlled trial) evidence to support their safety or efficacy. Data from descriptive studies and expert opinion suggest that complementary interventions can reduce the level of analgesics required by some patients, and for patients sensitive to opioids these approaches may offer considerable benefit.28–31 Care strategy 17.2 Examples of nonpharmacological interventions • • • • • •

Relaxation Hypnosis Acupuncture Visualisation Art therapy Biofeedback

• • • • •

Imagery Distraction Music therapy Reflexology Massage

Providing nursing care for a person experiencing cancer pain is a considerable nursing challenge. Its complexity demands that nurses open their minds to different ideas of ways in which to interact with people in pain.5 This also involves relying on a process of individualising established components of pain relief. • Don’t wait until pain becomes severe before intervening. • Use a variety of pain relief measures, but above all, include what the patient says works.

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Box 17.3

Guidelines for use of morphine for cancer pain in adults17,19,25,26

• Administration: – The optimal route of administration of opioids is by mouth, but if patients are unable to swallow drugs, rectal and subcutaneous routes can be used, as the bio-availability and duration of action are the same. Morphine suppositories are widely available in several doses, but if you do have trouble accessing them, they can be prepared easily in hospital pharmacies. – Morphine can be given subcutaneously every 4 hours or by continuous infusion. When converting from oral to subcutaneous morphine for chronic pain the dose should be divided by two (the precise ratio probably lies between 1 : 2 and 1 : 3). Other opioids such as diamorphine and hydromorphone may be preferred to morphine for parenteral use. However, neither drug is more effective than morphine, but both are more potent. The relative potency ratio of oral morphine to subcutaneous diamorphine is 1:3. – Morphine should not be given intramuscularly for chronic cancer pain as subcutaneous administration is easier and less painful for the patient. – If patients have generalised oedema, tend to develop erythema, soreness, or sterile abscesses with subcutaneous administration, have coagulation disorders, or poor venous circulation, subcutaneous administration is contraindicated and intravenous (IV) administration should be considered instead. IV administration should also be considered if patients have indwelling central catheters or peripheral IV access. The relative potency of oral to intravenous morphine is about 1 : 3. Bolus IV doses of morphine will be higher in potency because of greater peak effects. – Controlled-release morphine tablets should not be crushed as this alters their dissolution and absorption characteristics. Vaginal or rectal administration is also contraindicated, as reduced bio-availability and haphazard absorption are likely. Sublingual and nebulised routes of morphine administration for pain management are not recommended as there is little evidence of predictability of absorption rates. • Dose titration should involve the prescription of immediate-release morphine (oral morphine in solution or immediate release tablets) every 4 hours. The same dose should be used for breakthrough pain and can be given as frequently as required, e.g. every hour. There is no evidence to suggest that patients experience any significant adverse effects when the full dose is administered for breakthrough pain. If immediate-release morphine is not available, the total daily dose requirement should be based on an individual’s previous analgesic intake. Breakthrough pain should be managed with non-steroidal anti-inflammatory drugs or with another short-acting opioid. If available, morphine sulphate injection solution can be administered orally or rectally for breakthrough pain. • Controlled-release morphine, which provides cover over a 12-hour period, should not be used when attempting to titrate the analgesic dose, as its delayed peak plasma concentration makes it more difficult to assess the adequacy of the dose given, and to respond quickly to patients’ needs. Several formulations are available but there is no evidence that they differ in their duration of effect or relative analgesic properties. However, care needs to be taken if changing between preparations, as there may be possible variations in release profiles and bio-availability. • Once stabilised, patients using a 4-hourly regimen based on immediate-release morphine can continue to use the same dose for breakthrough pain. However, if a patient’s pain is controlled using a 12-hourly regimen, the immediate-release morphine dose used to counteract breakthrough pain should be one-third of the regular 12-hourly dose. • If a patient’s pain returns consistently before the next dose of regular analgesia is due, the 4- to 12-hourly prescription should be increased. Relying solely on breakthrough analgesia to ‘top up’ the analgesic requirement will not only result in greater inconvenience for the patient, but may also lead to increased adverse side-effects. For some patients, however, a 12-hourly regime is inadequate to control their pain, and controlled-release morphine may be required with an 8hourly regime if their pain is to be effectively managed. • Fentanyl, methadone and buprenorphine are well absorbed sublingually and may be used as alternatives to subcutaneous morphine. Buprenorphine is commonly used sublingually and may be a useful alternative for low-dose oral morphine where patients have difficulty swallowing. Evidence of efficacy in long-term use is limited. Early indications suggest that fentanyl provides continuous, controlled systemic delivery of analgesia for 72 hours via transdermal patches. It appears to be well tolerated and effective, but further evidence of its place in the routine management of cancer pain is required. • Advising a patient to take a double dose of their immediate-release morphine at bedtime, to prevent night-time waking and disturbed sleep, is a widely accepted practice, which appears to have no adverse effects. However, no formal research evidence is available to support this practice.

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• How active does the patient want to be in managing his or her care and what means of patient education and information provision best suits his or her needs? • How active can the patient be in managing his or her care and who else in the patient’s support network should be involved? • What are the individual’s subjective perceptions of the severity of pain and the distress caused by it? • What is the best way of assessing efficacy of pharmacological and non-pharmacological interventions? Are pain charts and/or patient diaries practicable?

Pain mechanisms Of the many kinds of nerve, only a few are concerned with nociception and the transmission of impulses associated with pain. Some nerves carry nociceptive impulses, while others carry impulses that directly affect the perception of pain. Three types of neurone seem to be involved with pain transmission: • large, heavily myelinated A-beta fibres – these respond to light pressure, and their stimulation leads to the sensation of tenderness • smaller, thinly myelinated A-delta fibres and fine, unmyelinated C fibres – A-delta and C fibres are the principal transmitters of pain impulses, although other fibres may also be involved. Damage to these fibres results in intense pain. The A-delta fibres give rise to sharp pain, while the C fibres give rise to dull, persistent pain. One of the earliest theories of pain was the specificity theory. It was postulated that there were special receptors for each type or modality of pain, e.g. Meissner’s corpuscles responded exclusively to touch, Pacinian corpuscles to pressure, Ruffini and Krayse end-organs to heat and cold, and free nerve endings to pain. Melzack and Wall went on to show that these assumptions were over-simplified, assuming a ‘rigid, fixed relationship between a neural structure and a psychological experience’.32

The pattern theory of pain followed the specificity theory. Criticised for discounting psychological aspects of the pain experience, the pattern theory was based on the belief that excessive stimulation of the skin receptors created particular patterns of nerve impulses that were summated in the dorsal horn of the spinal cord and consequently caused pain. However, the most widely recognised pain theory is the gate control theory (GCT), first espoused by Melzack and Wall in 1965.32 The theory proposes that: • the transmission of nerve impulses is modulated by a spinal gating mechanism in the dorsal horn (substantia gelatinosa) • larger fibres tend to close the gate (inhibit transmission), while smaller fibres tend to open the gate (facilitate transmission) • descending impulses from the cerebral cortex influence the gate mechanism • a system of specialised conducting fibres activates selective cognitive processes that influence the gating mechanism via descending fibres. Pain occurs when spinal cord transmission exceeds a critical level. Despite its advantages over earlier pain theories, the GCT has been criticised for lacking detail about the interactions it proposes. Nevertheless, it is still the most important working model for pain researchers.27,32–34

Bone pain35–40 Bone metastases are the most common cause of cancer pain. Any part of the skeleton may be involved, but the axial skeleton and the proximal limb bones are particularly susceptible to metastatic disease. Approximately 50% of all bone metastases, usually resulting from bloodborne spread, arise from breast, lung, and prostate tumours. Once inside the bone, pressure on the periosteum, nerves, and muscles surrounding the bone may lead to pain. Pain-sensitive nerve endings located in the periosteum or joints may be activated by mechanical stimuli, i.e. expansion of the tumour within the bone and/or chemical stimuli, e.g. prostaglandins. Prostaglandin production by

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bone metastases causes osteolysis and lowers the peripheral pain threshold. Characteristics of bone pain

• Base of skull metastases – metastatic spread to the head and neck (including orbital, parasagittal, middle fossa, jugular foramen, and clivus metastases, sphenoid sinus metastases and odontoid fracture) may result in aching facial pain, as well as severe headache, sometimes exacerbated by neck flexion (depending on the sites involved). Diplopia, papilloedema, nasal stuffiness, a sense of fullness in the head, hoarseness, dysphagia, dysarthia, trapezius muscle weakness and ptosis, paralysis of the tongue, weakness of the sternomastoid, and stiff neck may also accompany bony metastatic spread to the head and neck region. • Bone metastases to C7–T1 may result in constant aching along the paraspinal areas radiating to both shoulders. One or other arm may also be affected where the patient experiences radiating pain to the ulnar region. The patient may also describe tenderness or pain when the spine is touched, parasthesia and numbness in the ulnar aspect of an arm, and progressive weakness of the triceps or hand. • L1 metastases may be accompanied by aching in the mid-back and sacroiliac joints and a radiating pain in the groins. Pain may be exacerbated when the patient lies down. • Aching pain in the sacral or coccygeal region characteristic of sacral metastases may be relieved by sitting or walking. Perianal sensory loss, bowel and bladder dysfunction, and impotence may also accompany sacral metastases. Management

Although some bone metastases cause no pain, small localised metastases can cause severe pain where there is associated nerve involvement or damage. Alternatively, for other patients, disseminated bone diseases may result in only minimal discomfort or no pain. Bone pain is generally only partly opioid responsive. A combination of NSAIDs and morphine should therefore be used as first-line treatment. NSAIDs inhibit prostaglandin production stimulated by bone metastases. NSAIDs are

classified under several different chemical classes, with marked variations reported in patients’ analgesic response to the various drugs. Therefore, if bone pain is not controlled with one particular NSAID, there is merit in trying a different drug from a different class. However, there is never an indication to use two NSAIDs concurrently. Corticosteroids (e.g. dexamethasone, with a starting dose of 8 mg) can be useful in the management of pain caused by bone metastases. However, their side-effect profiles make corticosteroids unacceptable as first-line or long-term therapy in the management of painful bone lesions. Radiotherapy is the most effective single therapy for the treatment of local metastatic bone pain, with response rates as high as 80% consistently reported.36 For some patients, radiotherapy can achieve complete pain relief, although the mechanisms by which pain control is achieved are poorly understood. Reduction of tumour bulk as cells are killed may result in a reduction in the pain experienced, but it may also be that pain-mediating agents released as a result of treatment, in conjunction with osteoclast/osteoblast interaction, contribute to pain relief. When used to manage pain caused by localised metastasis, pain relief may occur within 2–3 days, with a maximum benefit seen at around 2–3 weeks following treatment. Immediate pain relief after local irradiation is rare. Therefore, it is important to continue with, and where necessary increase, the patient’s analgesic regime throughout radiotherapy and for the immediate period following treatment. Studies comparing the benefits of a single fraction of 8 Gy with a course of 5–10 fractions of 20–30 Gy have demonstrated few advantages of multiple fractionation over a single dose,36 although multiple fraction regimes continue to be the treatment of choice where there is concern over possible fracture or nerve involvement. Radiotherapy has been demonstrated to help prevent pathological fractures and promote healing following a pathological fracture. For patients with more widespread disease, hemi-body irradiation may be required, with a single dose of 8 Gy to the lower body or 6 Gy to the upper body, as appropriate. However, sideeffects from hemi-body irradiation may be particularly distressing and up to two-thirds of patients

456 The management of cancer-related problems

may experience nausea, vomiting, or diarrhoea. The majority of patients will experience bone marrow suppression, and in some instances patients may experience radiation pneumonitis. Despite this, for patients whose pain is resistant to other forms of management, hemi-body irradiation has been shown to achieve effective pain relief, which, for the majority of terminally ill patients, may be maintained until death. In addition, pain relief may be achieved within 24–48 hours. As with any treatment, the side-effects of therapy must be balanced against patients’ subjective wishes and the potential benefits of treatment. For patients whose pain does not respond to radiotherapy or who relapse after an initial response, there is little evidence that retreatment with radiotherapy is effective. Alternative approaches such as treatment with strontium-89 (SR89),39 or intravenous bisphosphonates38 may be more appropriate. Surgery may be useful in managing pain caused by a pathological fracture resulting from bone metastases, or where there is a high risk of pathological fracture. Internal fixation is the preferred management when long bones are affected, but is not feasible for rib fractures or vertebral collapse, when local radiation should be used. As with any therapy, the benefits of treatment must be weighed against any possible costs to the individual. For patients in the advanced stages of illness, attempts at internal fixation with the associated demands of analgesia and risks posed by post-operative complications of bed-rest may be inappropriate, and local irradiation should again be the treatment of choice. Radioactive isotopes used in the management of multiple painful bone metastases have demonstrated some promising results. The most widely reported in the management of pain caused by bone metastases is strontium-89 (SR-89). SR-89 is a calcium analogue with a half-life of 50.5 days. It is taken up by bone tissue and has the capacity to deliver therapeutic levels of radiation to a bone site for several months. It has been demonstrated to bring about equally effective pain relief when compared with five daily fractions or a single fraction of local radiotherapy given to patients with metastatic prostate cancer, and has also been shown to be an effective adjunct to local radio-

therapy with the same cancer group.39 Its potential to benefit terminally ill patients is limited, as a period of 7–20 days is required before pain relief is achieved. Despite its radioactive properties, SR89 poses a minimal threat to patients or health care professionals. Careful handling of any excreta is required, and gloves should be worn when disposing of any urine or faeces, or when blood is taken. Ideally patients should be discouraged from using bedpans, and where a patient is incontinent of urine sensitive explanation should be given, prior to administration of the isotope, of the need to catheterise the patient for a period of 1 week after treatment. Bisphosphonates, chemical analogues of pyrophosphate, are powerful inhibitors of osteoclastic function. They have become the treatment of choice when managing malignant hypercalcaemia, and have also demonstrated some potential as analgesic agents in patients with multiple myeloma, prostate, or breast cancer. The most widely used and evaluated to date is clodronate. Despite evidence to suggest that intravenous bisphosphonantes do relieve malignant bone pain, potential differences among them, the existence of dosedependent effects, and lack of information relating to the long-term risks of their use have led to the conclusion that they should only be used at present with patients who have severe bone pain that is resistant to management with opioids, NSAIDs, and corticosteroids.38 Varying degrees of pain relief from bone metastases caused by breast and prostatic cancer have been reported as a result of chemotherapy. However, it is not clear whether symptom relief is brought by tumour regression or whether pain relief obtained as a result of chemotherapy administration occurs independently of tumour response. Contradictory evidence of the efficacy of repeated doses of calcitonin in the management of bone pain characterises the current state of knowledge regarding its use as an adjuvant analgesic. As its benefits and long-term risks are unknown at this time, it should only be considered as an experimental treatment. Similarly, contradictory findings have been reported with l-dopa, and its use is currently not recommended for routine trials.

Pain 457

Neuropathic pain41–45 Neuropathic pain is non-nociceptive (i.e. visceral, somatic, or muscle spasm pain caused by stimulation of nerve endings), and may arise from disturbances of function or pathological change in peripheral and/or central nervous systems. Neuropathic pain is therefore not a discrete entity. It may comprise: • peripheral nerve injury (deafferentation pain), e.g. neuroma or nerve infiltration • central nervous system injury, e.g. spinal cord compression • mixed peripheral and central injury, e.g. postherpetic neuralgia. Distinguishing characteristics include the following: • abnormalities in pain quality – generally referred to as allodynia, hyperalgesia, and hyperpathia. Allodynia, hyperalgesia, and hyperpathia are commonly referred to as dysesthesia, and associated sensations include tingling, prickling, electricity-like effects, burning, and lancinating pain. Allodynia is pain caused by a stimulus that does not normally lead to pain, e.g. temperature or pressure; hyperalgesia refers to an increased response to a stimulus that does not normally cause pain; hyperpathia refers to pain caused in a relatively anaesthetic area of the body by an exaggerated reaction to a stimulus • pain distribution consistent with neural damage • evidence of neural injury or disease. Major causes of neuropathic pain in patients with cancer

Neuropathic pain can be caused by compression or infiltration of nerves by tumour, nerve trauma due to diagnostic or surgical procedures, nervous system injury including spinal cord compression, and following chemotherapy or radiotherapy. Specific causes include the following: • cranial nerve involvement due to base of skull metastases mainly from breast, lung or prostate cancers; leptomeningeal metastases; or infiltration from head and neck tumours

• post-herpetic neuralgia, frequently seen in association with malignancy • intercostal nerve injury due to rib metastases • tumour invasion of the sciatic notch • epidermal tumour masses or leptomeningeal metastases, which may lead to dermatomal pain • radiculopathy, which is exacerbated by coughing, and sneezing. Painful radiculopathy may be an indication of spinal cord compression and therefore requires urgent magnetic resonance imaging (MRI) scanning. Complaints of central back pain occurring in a rapid crescendo pattern may be an especially significant sign of probable cord compression • brachial plexus infiltration, most commonly as a result of lymph node metastases from breast cancer or lymphoma, or direct infiltration from a pancoast tumour • direct extension of colorectal or cervical carcinomas, sarcoma, lymphoma, or breast metastases, which may cause lumbosacral plexopathy • neuronopathy or ganglionopathy, which may present with dysesthesias, parasthesias, and sensory loss in extremities, resulting in paraneoplastic peripheral neuropathy • high-dose intrathecal and epidural injections of opioids, which may result in neuropathic pains; approximately 20% of patients who receive anaesthetic epidural injections experience neuropathic pain • chronic neuropathic pain, characterised by a burning or constricting sensation in the chest wall, axilla, or medial arm; this has been reported to affect as many as 20% of women post-mastectomy. Patients undergoing surgery for head and neck tumours or thoracotomy for lung tumours may also experience considerable neuropathic pain, which varies in onset and duration. Thoracotomy and post-mastectomy pain usually develops shortly after surgery, while pain associated with neck block dissection may not occur for weeks or months after treatment • radiotherapy, which may lead to myelopathy, plexopathy, and neuropathy. Radiation myelopathy most commonly occurs after radiotherapy for extraspinal tumours, while brachial plexopathy may follow chest wall and axillary radiotherapy. Sacral plexus irradiation has

458 The management of cancer-related problems

been reported to result in paresthesias, distal weakness, and pain in lower extremities • vinca alkaloids (especially vincristine), and cisplatinum: these are known to cause painful neuropathy in some patients receiving chemotherapy. Paclitaxel and more rarely cytarabine have also been associated with the development of peripheral neuropathy. Withdrawal of the causative agent may result in resolution of the pain over some months; however, cisplatinum may cause persistent neuropathies even after withdrawal • large doses of parenteral dexamethasone: these may be followed by a burning sensation in the perineum. This may be prevented by slow infusion. Care strategy 17.3 Important factors to consider if neuropathic pain is suspected 1. Does the patient describe tingling or burning pain? 2. Do bed covers or underclothes cause severe pain? 3. Is the pain felt locally, does it radiate, cause an aftersensation, or is it a delayed sensation occurring some time after the stimulus? 4. Does the patient describe any associated weakness, vasomotor or dystrophic changes? 5. Does the patient have a primary tumour known to cause neuropathic pain as a consequence of metastatic spread or direct/primary infiltration/nerve damage? 6. Has the patient received cancer treatments with the potential to cause neuropathic pain? 7. Is the patient immunocompromised? Infection can cause peripheral neuropathy with intractable, escalating pain. 8. Does the patient have non-malignant degenerative disease of the spine, osteoporosis, aortic aneurysm, vasculitis, metabolic abnormalities, or nutritional deficiencies, all of which are known to cause central or peripheral neuropathies?

bination of opioid, non-opioid, and adjuvant analgesics be used judiciously, after a thorough examination of the patient, including computed tomographic and MRI scans where appropriate. NSAIDs and adjuvant analgesics have been widely used in the management of neuropathic pain. Combinations of non-steroidals and an opioid are regularly used in clinical settings, and their efficacy is widely acknowledged. First-line adjuvant analgesia in the management of neuropathic pain

Adjuvant analgesics, i.e. drugs with primary indications other than analgesia, particularly tricyclic antidepressants such as amitryptyline, are accepted agents in the management of neuropathic pain. Evidence suggests that neuropathic pain responds more quickly to antidepressant medication than does depression, and thus requires lower doses. However, full dosage may be necessary and should not be withheld. Other heterocyclic antidepressants, e.g. trazodone, may be less effective as they have different side-effect profiles to the tricyclics and should be used with caution (see Care strategy 17.4). Recent evidence attests to the benefits of gabapentin in the treatment of neuropathic pain.44 Gabapentin is an anti-epileptic originally synthesised as a cyclic analogue of gamma aminobutyric acid (GABA), to be used to reduce seizure frequency when added to conventional anti-epileptic drugs. Data from large clinical trials indicate that it has similar efficacy to tricyclic antidepressants and carbemazepine, but may have fewer sideeffects. The most notable are somnolence and dizziness. Evidence suggests that higher analgesic response rates may be observed when gabapentin is prescribed with opioids, because of a synergistic interaction.42 Second-line adjuvant analgesia

The use of opioids in the management of neuropathic pain remains controversial. Further evidence is required, which takes into account the plethora of aetiological and pathological mechanisms prevalent amongst heterogeneous groups of patients with cancer who present with neuropathic pain. Evidence available to date suggests a continuum of opioid responsiveness for patients, and best practice guidelines advocate that a com-

• Baclofen appears to be useful in trigeminal neuralgia. The usual dose is 20–120 mg. • Oral local anaesthetics such as tocainide may be useful in either continuous or lancinating dysethesias. They may be helpful alternatives when patients experiencing continuous dysesthsias have not responded to tricyclic antidepressants. • Neuroleptic drugs such as fluphenazine and haloperidol can be used in low doses (2–8 mg

Pain 459

Care strategy 17.4

Recommended dose ranges of antidepressants/anticonvulsants

Tricyclic antidepressants • Amitryptyline – start with 10–25 mg orally, increasing gradually to 150 mg • Desipramine – start with 10–25 mg orally, increasing gradually to 150 mg • Imipramine – start with 15.5 mg orally, increasing gradually to 150 mg • Clomipramine – start with 10 mg orally, increasing gradually to 150 mg Adjuvant anticonvulsants • Carbamazepine – 200–400 mg three times a day (starting with 100 mg) • Gabapentin – used in divided doses from 300 mg to a maximum of 3600g per day; but if patients have any brain damage the dose must be started lower (100 mg) and built up slowly • Phenytoin – 300–400 mg (starting with 100 mg) Anticonvulsant drugs such as carbamazepine have been found to be particularly effective in the management of lancinating pains. Phenytoin, valporic acid, and clonazepam may also be effective.

Care strategy 17.5

Relaxation – some recommendations for practice

Teaching a patient, family member or friend a relaxation technique is relatively quick and easy and the rewards can be significant. There are many forms of relaxation but progressive muscle relaxation (PMR) appears to be the most commonly used by nurses in their daily practice.5 PMR involves tensing and then relaxing separate muscle groups throughout the body one after the other. Below are some basic phrases you may find helpful to use with patients and family members. • Find yourself a quiet place. This may be your bedroom or a favourite spot in the garden. • Make sure that you are sitting or lying comfortably and loosen any tight clothing. • You may choose to have music playing or to sit in silence. Tell your family or friends that you are setting this time aside so that they do not disturb you. They may even choose to join you. • You may choose to focus on a picture or a flower or just look at a distant point. You may prefer to close your eyes. Most relaxation texts will emphasise the importance of deep breathing and of beginning the relaxation process by taking several deep breaths. For some patients with advanced disease, deep breathing may cause discomfort or even cause additional distress, e.g. patients with lung cancer who are breathless. Therefore, before beginning the relaxation process ask your patient about his or her breathing and find the most appropriate breathing pattern for him or her. If the patient is breathless try suggesting: ‘Be aware of your breathing just for a moment and then just try to maintain a comfortable breathing pace throughout the relaxation period’. If the patient can breathe normally you may choose to say: ‘As you breathe in count 1-2-3 slowly, hold your breath for 1-2-3 and breathe out 1-2-3-4-5-6’. The next few steps are part of the process of progressive muscle relaxation. They are directed at relaxing the shoulders but can be applied to any part of the body. • Once you have found a comfortable, well-supported position, slowly and gently draw your shoulders up towards your ears. Hold them in that position for as long as is comfortable for you (about half a minute to a minute). • After you have felt the tension in your shoulders slowly let them relax, lowering your shoulders gently back to their usual position. Be aware of a release in tension as you do this. • Some people talk about thinking of feelings of warmth and peace as they relax their shoulders, letting go of pain, fear, and anxiety. • If you feel able, repeat this action a second time. Some people prefer to set aside 20–30 minutes during the day to carry out relaxation of all muscle groups within the body. Others find that repeating some form of relaxation for as little as 5–10 minutes, two or three times a day, helps prevent tension from building up.

460 The management of cancer-related problems

per day) for neuropathic pain. However, the benefits of their prolonged use as adjuvant analgesics must be weighed against the risk of developing tardive dyskinesia. • Anxiolytics such as alprazolam or clonazepam may also be useful in the management of neuropathic pain. Oral alprazolam (0.25–2 mg three times a day) has been shown to be helpful in some patients with phantom limb pain, while oral clonazepam (0.5–4 mg twice a day) may be useful in the management of lancinating pains. Additional approaches to the management of neuropathic pain include: • sympathetic blockade (e.g. nerve blocks) • epidural injections (particularly bupivocaine, which has been shown to be effective with patients unresponsive to opioid treatment) • neurosurgical interventions (although success rates are limited) • and neurostimulation (e.g. TENS).

References 1. Hanks G.W. (1995). Problem areas in pain and symptom management in advanced cancer patients. European Journal of Cancer Care 31a, 869–870. 2. Menzies K., Murray J. and Wilcock A. (2000). Audit of cancer pain management in a cancer centre. International Journal of Palliative Nursing 6, 443–447. 3. Dahl J.L. (2004). Pain: impediments and suggestions for solutions Journal of the National Cancer Institute Monographs 32, 124–126. 4. Hiscock M. (1993). Psychological aspects of acute pain. Professional Nurse December, 158–160. 5. Lanceley A. (1995). Wider issues in pain management. European Journal of Cancer Care 4, 153–157. 6. World Health Organization. (1990). Cancer Pain Relief and Palliative Care. Geneva: World Health Organization. 7. McCaffrey M. (1979). Nursing the Patient in Pain. London: Harper and Row, pp. 13–14. 8. Merskey H. (1976). Psychiatric aspects of the control of pain. In Bonica J.J. and Albe-Fessard D. (eds.) Advances in Pain Research and Therapy, Vol. 1. New York: Raven Press, pp. 711–716. 9. Bates M.S. (1987). Ethnicity and pain: a biocultural model. Social Science and Medicine 24, 47–50.

10. Oncology Nursing Society. (2004). Cancer Pain Management ONS Positions. www.ONS.org (accessed 3 August 2007). 11. Cohen M.Z., Easley M.K., Ellis C. et al. (2003). Cancer pain management and the JCAHO’s pain standards: an institutional challenge. Journal of Pain and Symptom Management 25, 519–527. 12. National Comprehensive Cancer Network. (2004). Guidelines for Supportive Care – Cancer Pain. Jenkintown: National Comprehensive Cancer Network. 13. Foley K.M. (1985). The treatment of cancer pain. New England Journal of Medicine 313, 84–95. 14. Jensen M.P. (2003). The validity and reliability of pain measures in adults with cancer. The Journal of Pain 4, 2–21. 15. Kleinman A. (1988). The Illness Narratives: Suffering, Healing and the Human Condition. New York: Basic Books. 16. Sternbach R.A. (1974). Pain Patients: Traits and Treatment. London: Academic Press, pp. 20–51. 17. Twycross R. (1988). The management of pain in cancer: a guide to drugs and dosages. Oncology 2, 35–44. 18. Heath C. (1989). Pain talk: the expression of suffering in the medical consultation. Social Psychology Quarterly 52, 113–125. 19. National Council for Hospices and Specialist Palliative Care Services (1994). Guidelines for Managing Cancer Pain in Adults. London: National Council for Hospices and Specialist Palliative Care Services. 20. Redmond K. (1996). Advances in supportive care. European Journal of Cancer Care 5(suppl. 2), 1–7. 21. Twycross R. (1984). Control of pain. Journal of the Royal College of Physicians of London 18, 32–37. 22. Bruera E., Macmillan K., Hanson J. and MacDonald R. (1989). The cognitive effects of administration of narcotic analgesics in patients with cancer pain. Pain 39, 13–16. 23. Sykes N.P. (1991). A clinical comparison of laxatives in a hospice. Palliative Medicine 5, 307–314. 24. Schug S.A., Grond S., Zech D., Jung H., Meuser T. and Stobbe B. (1992). A long-term survey of morphine in cancer pain patients. Journal of Pain and Symptom Management 7, 259–266. 25. Expert Working Group of the European Association for Palliative Care (1996). Morphine in cancer pain: modes of administration. British Medical Journal 312, 823–826. 26. Virtual Medical Centre. Cancer Pain. www.virtualcancercentre.com (accessed 3 August 2007). 27. Wentworth Dolphin N. (1983). Neuroanatomy and neurophysiology of pain: nursing implications. International Journal of Nursing Studies 20, 255–263. 28. Syrjala K.L., Cummings C. and Donaldson G.W. (1992). Hypnosis or cognitive behavioral training for the reduc-

Pain 461 tion of pain and nausea during cancer treatment: a controlled clinical trial. Pain 48, 137–146. 29. Hammar M., Frisk J., Grimas O. et al. (1999). Acupuncture treatment of vasomotor symptoms in men with prostatic carcinoma: a pilot study. Journal of Urology 161, 853–856. 30. Vickers A.J. and Cassileth B.R. (2001). Unconventional therapies for cancer and cancer-related symptoms. The Lancet Oncology 2, 226–232. 31. Deng G. and Cassileth B.R. (2005).To what extent do cancer patients use complementary and alternative medicine? Nature Clinical Practice Oncology 2, 496–497. 32. Melzack R. and Wall P. (1988). The Challenge of Pain. London: Penguin Books. 33. Astley A. (1990). A history of pain. Nursing 4, 33–53. 34. Melzack R. and Wall P. (1965). Pain mechanisms: a new theory. Science 150, 971–979. 35. McDonald N. (1995). Principles governing the use of cancer chemotherapy in palliative medicine. In Doyle D., Hanks G. and MacDonald N. (eds.) The Oxford Textbook of Palliative Medicine. Oxford: Oxford University Press, pp. 105–117. 36. Hoskin P. (1995). Radiotherapy in symptom management. In Doyle D., Hanks G. and McDonald N. (eds.) The Oxford Textbook of Palliative Medicine. Oxford: Oxford University Press, pp. 117–129. 37. Portenoy R. (1995). Adjuvant analgesics in pain management. In Doyle D., Hanks G. and McDonald N. (eds.)

The Oxford Textbook of Palliative Medicine. Oxford: Oxford University Press, pp. 187–203. 38. Ernst S., Brasher P., Hagen N. et al. (1997). A randomized, controlled trial of intravenous clodronate in patients with metastatic bone disease and pain. Journal of Pain and Symptom Management 13, 319–326. 39. Kan M. (1995). Palliation of bone pain in patients with metastatic cancer using strontium-89 (Metastron). Cancer Nursing 18, 286–291. 40. O’Brien T. (1993). Pain. In Saunders C. and Sykes N. (eds.) The Management of Terminal Malignant Disease. London: Edward Arnold, pp. 33–62. 41. Breitbart W. (1998). Psychotropic adjuvant analgesics for pain in cancer and AIDS. Psycho-oncology 7, 333–345. 42. Billings A. (1994). Neuropathic pain. Journal of Palliative Care 10, 40–43. 43. Martin L.A. and Hagen N.A. (1997). Neuropathic pain in cancer patients: mechanisms, syndromes and clinical controversies. Journal of Pain and Symptom Management 14, 99–117. 44. Bennett M.I and Simpson K.H. (2004). Gabapentin in the treatment of neuropathic pain. Palliative Medicine 18, 5–11. 45. Caraceni A., Zecca E., Bonezzi C. et al. (2005). Gabapentin significantly improves analgesia in people receiving opioids for neuropathic cancer pain. Cancer Treatment Reviews 31, 58–62.

CHAPTER EIGHTEEN

Nausea and vomiting Meinir Krishnasamy

Cancer continues to be widely conceived of as an uncontrollable, capricious disease.1 It may be suffused with feelings of fear, shame, and repulsion, feelings culturally and socially affiliated with physical manifestations such as vomit or malodorous wounds. Cancer and its treatment transpose many individuals to a world where previously private phenomena such as vomiting are moved into a public arena. It is unsurprising therefore that nausea, vomiting, and retching have repeatedly been identified by patients as being among the most disruptive, distressing, and feared side-effects of radiotherapy and chemotherapy.2,3 While physicians are concerned with disease, clients are concerned with illness . . . This distinction defines a crucial domain for nursing. Nursing uses the model of illness and the model of disease and mediates the two.4

Disease refers to the way in which doctors and nurses frame illness within physiological and pathological theoretical models.5 Illness refers to patients’ perceptions, experiences, interpretations, and patterns of coping with symptoms or problems.1 Inherent to any discussion of effective interventions for nausea and vomiting is the premise that the individual’s experience of illness forms the cornerstone of nursing care. Regardless of the goal of treatment, whether it be prophylaxis or symptom control, the individual’s beliefs and

anxieties will strongly influence their ability to continue with any course of treatment, and to live with a life-threatening disease.2 The importance of understanding the enormity of the impact of a symptom upon an individual’s being is powerfully described by one young person: The severity of nausea and vomiting at times made the thought of death seem an almost welcome relief.6

For many, treatment becomes intolerable as a consequence of poorly controlled nausea and/or vomiting, while for some life itself may seem to be too high a price to pay for such anguish and suffering.7 Persistent nausea and vomiting is known to be a factor in half of all missed appointments and delays in treatment, and for some leads to withdrawal from potentially curative treatment altogether.6 Nausea and vomiting are among the most distressing side-effects of cancer therapy.8–10 Nausea, vomiting, and retching are discrete entities (see Box 18.1), and yet evidence suggests that patients are commonly invited to respond to questions, or to complete self-report measures, without prior clarification of the problem being explored.2 Two-thirds of medical, surgical, gynaecological, and oncology patients are unfamiliar with the term nausea, using the term ‘sick at stomach’ instead, while the phrase ‘throw up’ is most frequently used to refer to vomiting.10

Nausea and vomiting 463

Assessment Misunderstandings over terms such as ‘nausea’ and ‘vomiting’ may lead to confusion and subsequently to poor management. Careful exploration of the nature, duration, subjective feelings, and physical manifestations of the symptom being experienced is fundamental. Measures of nausea and vomiting exist; however, these may not be either reliable or valid when used in everyday practice. Box 18.1 The concepts of nausea, vomiting, and retching • Nausea – a subjective phenomenon; an unpleasant sensation experienced in the back of the throat and the epigastrium, which may or may not result in vomiting. It has been described as an autonomic response, a conscious recognition of a desire to vomit. • Vomiting – the forceful expulsion of stomach, duodenum, or jejunum contents through the oral cavity. As the stomach contents become trapped between the forceful contractions of the muscles of the abdomen and diaphragm, intragastric pressure builds up, the oesophageal sphincters open, and vomiting follows. • Retching – an attempt to vomit without bringing anything up. Retching is controlled by the respiratory centre in the brainstem. The respiratory centre lies near the vomiting centre. It shares the common neural pathway of the fifth, seventh, tenth, and twelfth cranial nerves, which are responsible for the changes in rate and depth of respiration that accompany nausea and vomiting.2,11

Objective observation tools used in studies measure the number of times emesis or retching occurs. They have several limitations. They fail to assess the perception of the distress caused by these symptoms and assume that nausea is an observable problem. The need for an observer to be present prevents measurement over time; observation is impractical in a busy ward or clinic setting. The advantages of using self-report questionnaires or diaries are clearly apparent. Visual analogue scales (VASs) offer a ready means of accessing subjective perceptions of symptoms, providing that the anchor statements at each end

of the scale are meaningful to the person completing the tool. Although well recognised as being reliable, valid, and sensitive, VASs can be confusing, and translating feelings into a quantifiable mark on a scale is difficult.12 Guidance may need to be given on how to complete these. Where self-report measures such as VASs are to be used, it is important to ensure that they address both the occurrence of the symptom and the degree of distress caused by it.10 For example, consider Figure 18.1. From the first VAS shown in Figure 18.1, it could be assumed that this person vomits very little, and as such experiences minimal distress. However, each time he vomits, he might interpret it as a manifestation of worsening disease. Fearing that with greater disease activity vomiting might become persistent, the distress experienced may become so intense that it almost leads to a life perceived to be devoid of any pleasure. To date, we know little of the consequences of cumulative distress resulting from anticipatory and prolonged nausea and vomiting.3 Without the added insight gained from the second VAS, or during skilled communication, management of the symptom and attempts at facilitating self-care may be ineffective. Aspinall wrote in 1976: The many books and articles about nurse care planning and implementation generally start with the problem, which supposedly has already been identified in some way . . . they [the books] usually encourage the nurse to use another approach if her action is unsuccessful, rather than consider the possibility that the patient’s disturbed or changed functioning may stem from a problem totally different from the one originally identified.13

If a nurse is to attach the correct diagnosis, facilitate subjective expression of the nature and meaning of the symptom, and plan effective care, then adequate theoretical knowledge and an ability to combine analytical and intuitive methods of thinking is needed. It is also important to draw upon what Benner and Wrubel14 describe as ‘perceptual awareness’,14 where knowing how (theoretical knowledge) and knowing that (practical knowledge15) work to complement each other. In Figure 18.2, the physiological mechanisms (the

464 The management of cancer-related problems I throw up:

Never

All the time

This gives an idea of how often this person vomits but it doesn't tell us whether:

Throwing up:

Doesn't bother me at all

Figure 18.1

Destroys all pleasure I have

Visual analogue scale.

knowing how) of nausea and vomiting are outlined. Pharmacological interventions for cancerinduced nausea and vomiting are outlined in Box 18.2.

Patterns of nausea and vomiting Nausea and vomiting can be compounded by the memories of previous treatment cycles; anticipatory, acute post-treatment or delayed onset nausea and vomiting can complicate effective control.19 The emetogenic potential of cancer chemotherapy varies greatly (see Table 18.1). Most drugs do not cross the blood–brain barrier and therefore appear to initiate vomiting through mechanisms other than direct stimulation of the CTZ, such as irritation of the CTZ via a peripheral pathway.2,20 Chemotherapy regimes that use several drugs associated with moderate to severe emetogenic potential are associated with higher risk of nausea and vomiting.21 Anticipatory nausea and vomiting may occur moments before administration of the drug(s) or

at any time when the individual thinks of aspects of the chemotherapy experience. For some people the smell of the hospital and the sight of the infusion pump may act as potent triggers. Other patients have described tastes and sounds, even the sight of nurses or doctors involved with their care, as potentiating factors.9 Factors associated with an increased risk of anticipatory nausea and vomiting are listed in Box 18.3. Anxiety and hostility may also contribute to the development of anticipatory nausea and vomiting, although the relationship between anxiety, nausea, and vomiting remains unclear.22 Nurses play a crucial role in the prevention and early detection of anticipatory nausea and vomiting.2 Through sensitive questioning and an accepting and knowledgeable response, nurses can avoid considerable suffering and give enhanced meaningful support. Radiation-induced nausea and vomiting is related to the dose and type of treatment. Radiotherapy to the upper gastrointestinal tract can result in vasculitis and direct irritation of the oesophageal mucosa, leading to nausea and

Nausea and vomiting 465

The emetic centre (EC) Lies bilaterally in the medulla near the level of the vagus and is composed of the true vomiting centre and the chemoreceptor trigger zone (CTZ). It controls all vomiting and may be stimulated from several neurological pathways. Vomiting

Peripheral afferent pathways including:

Central nervous system

Neurotransmitters

• Afferent vagal and visceral — receiving input from the gastrointestinal (GI) tract • Afferent vestibulocellular — stimulated by rapid changes in motion, perceived by the labyrinth of the inner ear • Sympathetic visceral pathways, stimulated by obstruction, ischaemia, inflammation and pain.

Central afferent pathways include: • The midbrain afferents (stimulated by raised intracranial pressure) • The hypothalamus, (mechanisms of stimulating vomiting centre unknown) • The cerebral cortex and limbic pathways (possibly stimulated by input from all sensory organs, mediating anticipatory nausea and vomiting) • The CTZ.

The CTZ can be stimulated by substances contained in the blood and/or cerebrospinal fluid. Neurotransmitter receptors that respond to specific chemicals, e.g. dopamine, histamine, serotonin, acetylcholine, are not limited to the CTZ, and appear to converge on the EC to induce nausea and vomiting.

Figure 18.2 Physiological mechanisms of nausea and vomiting.2,4,16

Box 18.2

Pharmacological interventions for cancer-induced nausea and vomiting

• Aprepitant is a neurokinin type 1 (NK-1) receptor antagonist.17 It exerts anti-emetic activity by blocking the NK-1 receptor. The endogenous neurotransmitter that usually binds to the NK-1 receptor is the 11-amino acid techykinin called substance P that is involved in many inflammatory and noxious reactions such as emesis. This new class of drug seems to be providing hope for the continued improved pharmacological management of chemotherapy-induced nausea and vomiting. • Phenothiazines, e.g. prochlorperazine, chlorpromazine exert their primary effect as dopamine antagonists, inhibiting transmission in the chemoreceptor trigger zone (CTZ). Associated with extrapyramidal reactions, acute dystonic reactions, autonomic and hypersensitivity reactions, they must be used with caution. Akathesia, described as feeling jittery and sleepy at the same time, is a common side-effect of phenothiazines, and its occurrence warrants discontinuation of the drug.2,10 • Serotonin antagonists, e.g. ondansetron, granistron, tropistron act by blocking serotonin-type receptors and have two possible sites of action: the vagal afferent peripheral nerve terminals, and the central terminals of the same afferent nerves.10 Although serotonin receptor antagonists have become first-line treatment in preventing acute post-chemotherapy nausea and vomiting, and have minimal side-effects, their ability to prevent delayed nausea and vomiting is less apparent. • Palonosetron is a new serotonin antagonist. It shares many of the characteristics of the existing available drugs in its class, however it has a much stronger affinity for the 5HT3 receptor as well as a markedly longer half life (37 hours versus 3–9 hours). • Substituted benzamide, e.g. metoclopramide – metoclopramide has been proven to be an effective anti-emetic against strongly emetogenic chemotherapy, including cisplatinum-based regimes.2 It appears to have two modes of action, including dopamine antagonist activity and promotion of gastric emptying, limiting reflux and retching.10 It has several potential distressing side-effects, including extrapyramidal reactions, diarrhoea, fatigue, and sleepiness. • Corticosteroids – dexamethasone is commonly used in conjunction with other anti-emetics, especially ondansetron and metoclopramide, when aggressive treatment regimes are administered. The exact mechanism of action of corticosteroids is unknown but it is postulated that they manifest antiprostaglandin activity.18 • Benzodiazepines, e.g. lorazepam, diazepam – benzodiazepines appear to act at thalamic, limbic, and hypothalamic levels of the central nervous system, although their exact mechanism is not known. They produce anxiolytic, sedative, hypnotic, skeletal muscle relaxant and anticonvulsant effects.10 As they are capable of producing all levels of central nervous system depression, they should be used with caution with elderly patients and with patients with poor respiratory function. • Antihistamines, e.g. diphenhydramine (Piriton) – their primary site of action is in the CTZ, although they are ineffective as single-agent anti-emetics. They are most commonly used alongside phenothiazines or metoclopramide, incorporated into aggressive anti-emetic regimens to help prevent extrapyramidal reactions.18 • Butyrophenones, e.g. droperidol, haloperidol act as dopamine antagonists in the CTZ and also have a sedating and anxiolytic effect. Hypotension and extrapyramidal reactions are significant side-effects.18 • Cannabinoids, e.g. marijuana – their mode of action is unknown but the anti-emetic effect may be related to the ‘high’ achieved by adequate blood concentration. Memory loss, mood changes, inco-ordination, euphoria, and hallucinations have all been documented as side-effects.10

Table 18.1

Emetic potential of commonly used cancer chemotherapy agents21

Highly emetogenic

Moderately emetogenic

Low emetogenic potential

Cisplatin Dacarbazine Cychlophosphamide BCNU

Doxorubicin Procarbazine Carboplatin Mitomycin-C Ifosfamide and mesna Mitoxantrone Cytosine arabinoside Daunorubicin Carmustine CCNU

Etoposide (dose and route dependent) Hydroxyurea 5-Fluorouracil (5-FU) Bleomycin Vinblastin Vincristine Methotrexate (dose related) Busulfan Taxol Taxotere

Nausea and vomiting 467

Box 18.3 Factors associated with increased risk of anticipatory nausea and vomiting16 • Being under 50 years of age • Previously poorly controlled nausea and vomiting • Subjective perceptions of the severity of the symptoms • A sense of increased warmth and weakness following therapy • A history of motion sickness.

vomiting.2 Symptoms may occur early in the course of treatment and as quickly as within 2 hours of completing each radiotherapy fraction. Consequently, an individual’s predisposition to anticipatory nausea and vomiting is great. Stomatitis, xerostomia, dysguesia, and abdominal cramping may all contribute to radiotherapy-induced nausea and vomiting,23 and for some individuals, anorexia and persistent retching rapidly result in a sore, dry mouth and abdominal cramping. Meticulous mouth care is therefore necessary, alongside prompt initiation of an effective antiemetic regime. Symptoms that persist or develop 24 hours or more after chemotherapy are defined as delayed nausea and vomiting. Its aetiology is unclear but may be due to the ongoing effect that the antimetabolites of cancer-related treatments continue to have on either the central nervous system or the gastrointestinal tract.18 As the blood levels of chemotherapeutic agents fall, the neurotransmitters that mediate nausea and vomiting are no longer ‘blocked’.2 Nurses need to develop tools to evaluate symptom-management strategies for use at home. As increasing numbers of patients attend hospital on a day-care basis, and political influences encourage the shift towards more home-based therapies and skilled care planning, and meaningful nursing outcome measures are paramount.

many challenging and important areas for future research. Richardson suggests several key areas for future research, which are outlined below.3 Considerable research efforts over the past decade have significantly improved the management of cancer-induced nausea and vomiting. However, the application of these findings within a holistic model of care continues to present cancer and palliative practitioners with a substantial therapeutic challenge. Box 18.4 Non-pharmacological interventions for nausea and vomiting • Self-care facilitation – Orem defines self-care as ‘the personal care that individuals require each day to regulate their own functioning and development’.24 It has been suggested as a means of promoting enhanced symptom control and as a means of encouraging individuals with cancer to avoid the regression sometimes associated with the disease.3,24 Nausea and vomiting may demand of an individual a new set of self-care actions. Where possible, the person will respond to these challenges, but when, as with a major life-event such as a diagnosis of cancer, self-care agency is overwhelmed, help is needed. Nurses have a key role to play in planning, designing, and evaluating new modes of self-care management. • Progressive muscle relaxation, humour, music, exercise, hypnosis, and systematic desensitisation – these activities redirect an individual’s attention away from nausea and vomiting.10 Whether their success is due to cessation of the symptoms or to perceptual exchange is unclear, but currently available evidence supports their effectiveness and continued use. • Patient education and written information – patient education is an integral part of symptom management, and written instructions are often indispensable for a group of people bombarded by disease-related information and psychological trauma.2

Areas for future nursing research Non-pharmacological interventions

Potential areas for research include:3

Non-pharmacological interventions that may help with nausea and vomiting are shown in Box 18.4. The benefits of many of these measures rely on anecdotal evidence. These present nurses with

• studies to explore the interface between pharmacological, behavioural, and self-care interventions in seeking to control chemotherapyinduced nausea and vomiting

468 The management of cancer-related problems

• investigation of the potential relationships between intervening variables such as age, gender, diagnosis, cancer treatment, self-concept, self-care agency, locus of control, and the cancer patient’s performance of self-care behaviour • development and testing of valid and reliable measures of self-care behaviours performed, and their effectiveness • descriptive studies to assess how individuals monitor and react to symptoms over the course of chemotherapy, and relate such symptoms to self-care behaviour.

References 1. Donnelly E. (1995). Culture and meanings of cancer. Seminars in Nursing Oncology 11, 3–8. 2. Hogan C.M. (1990). Advances in the management of nausea and vomiting. Nursing Clinics of North America 25, 475–497. 3. Richardson A. (1991). Theories of self-care: their relevance to chemotherapy-induced nausea and vomiting. Journal of Advanced Nursing 16, 671–676. 4. Dougherty M. and Tripp-Reimer T. (1990). Nursing and anthropology. In Johnson T.M. and Sargent C.F. (eds.) Medical Anthropology: A Handbook of Theory and Method. New York: Greenwood, pp. 174–186. 5. Kleinman A. (1988). The Illness Narratives: Suffering, Healing and the Human Condition. New York: Basic Books. 6. Stroudermire A., Contanch P. and Laszlo J. (1984). Recent advances in the pharmacologic and behavioural management of chemotherapy induced emesis. Archives of Internal Medicine 144, 1029–1033. 7. Khan D.L. and Steeves R. (1995). The significance of suffering in cancer care. Seminars in Oncology Nursing 11, 9–16. 8. Coates A., Abraham S., Kay S., Sowerbutts T., Frewin C. and Fox R. (1983). On the receiving end: patient perceptions of the side-effects of cancer chemotherapy. European Journal of Cancer and Clinical Oncology 14, 203–208. 9. Nerenz D., Leventhal H. and Love R. (1982). Factors contributing to emotional distress during cancer chemotherapy. Cancer 50, 1020–1027.

10. Rhodes V., Johnson M. and McDaniel R. (1995). Nausea, vomiting and retching: the management of the symptom experience. Seminars in Oncology Nursing 11, 256–265. 11. Norris (1982). Concept Clarification in Nursing. London: Aspen. 12. Gift A.G., Plaut S.M. and Jacox A.K. (1986). Psychological and physiologic factors related to dyspnoea in subjects with chronic obstructive pulmonary disease. Heart and Lung 15, 595–601. 13. Aspinall M.J. (1976). Nursing diagnosis – the weak link. Nursing Outlook 24, 433–437. 14. Benner P. and Wrubel J. (1982). Skilled clinical knowledge: the value of perceptual awareness. Nurse Educator May–June, 11–17. 15. Polyani M. (1962). Personal Knowledge. London: Routledge and Kegan Paul. 16. Morrow G.R. (1984). Clinical characteristics associated with the development of anticipatory nausea and vomiting in cancer patients undergoing chemotherapy treatment. Journal of Clinical Oncology 2, 1170–1179. 17. Aapro M. and Johnson. J. (2005). Chemotherapy-induced emesis in elderly cancer patients: the role of 5-HT3 receptor antagonists in the first 24 hours. Gerontology 51, 287–296. 18. Gralla R.J. (1993). Antiemetic therapy. In DeVita V., Hellman S. and Rosenberg S. (eds.) Principles and Practice of Oncology, 4th edition. Philadelphia, PA: Lippincott, pp. 2238–2347. 19. Eick-Swigart J. (1995). What cancer means to me. Seminars in Oncology Nursing 11, 41–42. 20. Fiore J.J. and Gralla R.J. (1984). Pharmacologic treatment of chemotherapy-induced nausea vomiting. Cancer Investigations 2, 351–361. 21. Chabner B.A. (1993). Anticancer drugs. In DeVita V., Hellman S. and Rosenberg S. (eds.) Principles and Practice of Oncology, 4th edition. Philadelphia, PA: Lippincott, pp. 328–339. 22. Ingle R.J., Burish T.G. and Wallston K.A. (1984). Conditionability of cancer chemotherapy patients. Oncology Nursing Forum 11, 97–102. 23. Holmes S. (1991). The oral complications of specific anticancer therapy. International Journal of Nursing Studies 28, 343–360. 24. Orem D. (1991). Nursing: Concepts of Practice, 4th edition. St Louis, MO: Mosby Yearbook.

CHAPTER NINETEEN

Fatigue Meinir Krishnasamy

Fatigue is one of the most common symptoms experienced by people with cancer.1 It is a nebulous concept, difficult to define, and intensely personal. The North American Nursing Diagnosis Association defines fatigue as ‘an unremitting and overwhelming lack of energy and an inability to maintain usual routines’.2 Carpenito describes fatigue as ‘an overwhelming, sustained sense of exhaustion and decreased capacity for physical and mental work’.3 People who experience fatigue describe it in many different ways, including, tiredness, lack of energy, lethargy, weakness, depression, anxiety, exhaustion, impaired mobility and functional capacity, motivation and concentration span, sleepiness, drowsiness, heaviness, an inability to carry on, as well as many other sensations.4–9 Evidence indicates that fatigue limits social activities, results in loss of valued activities, impacts family life and relationships, and results in feelings of social isolation and lowered self-esteem.10–14 Guilt, anger, and boredom have all been reported as accompanying cancer-related fatigue.10,11 The manifestations of fatigue identified in studies of cancer-related fatigue are outlined in Figure 19.1. Models of fatigue have focused on its six distinct dimensions:2 • temporal – refers to the timing of fatigue, its onset and duration, and its pattern2 • sensory – refers to subjective experiences of fatigue, factors that exacerbate and alleviate it,

• • •

•

and the presence of any concurrent problems, for example pain, nausea, or breathlessness17 cognitive/mental – focuses on the ability to concentrate, changes in attention span, memory recall, and degree of alertness2,17,18 affective/emotional – refers to changes in mood, distress, and anxiety caused by the fatigue2,17,18 behavioural – refers to functional status, ability to undertake work, social and recreational activities, changes in sleep pattern, and nutritional intake17,18 physiological – refers to findings from the medical history, including stage of disease and its symptoms, side-effects of malignancy and treatment, concurrent diseases, past coping mechanisms, and family history.2,17,18

A definitive classification system by which to diagnose and grade cancer-related fatigue is now available through the International Classification of Diseases (ICD-10).19–21 This clinically useful classification system defines cancer-related fatigue as: • the presence of six or more out of 11 possible fatigue symptoms including for example, ‘diminished energy’, ‘increased need to rest’, ‘significant fatigue’, present every day or nearly every day during the same 2-week period in the past month • the symptoms cause clinically significant distress or impairment in important aspects of functioning

470 The management of cancer-related problems (a)

(d)

Worn out, tired, lethargic, weak, no energy, exhausted

Pale, shallow respiration, unhappy appearance, reduced eye-contact

(b)

Decreased motivation and interest, irritability, sleepy

(e)

(c)

Decreased attention, impaired concentration and perception

Slow speech, no desire to talk

(f) Limited activity, restricted physical and mental activities

Figure 19.1

Manifestations of fatigue.1,9,15,16

• the symptoms result from cancer or cancer treatment • the symptoms are not primarily a consequence of co-morbid psychiatric disorders. In addition to objective screening and assessment, nurses must also recognise that effective management of cancer-related fatigue relies on exploring the meaning of the problem with individuals. For the person with cancer, fatigue may be the first sign of ill-health, leading him or her to seek medical advice. It may therefore become a potent symbol of the presence of disease, possessing great significance for the patient and family. Thorough assessment of the problem in all its complexity is therefore essential to effective person-centred care. Asking about duration, recuperative purpose, predictability, response to selfcare measures, its nature, and the distress associated with it contribute to the developemnt of an individualised plan of care. Despite the development of numerous fatigue-assessment scales over the past decade, psychometrically sound, clinically applicable instruments continue to need further refinement.22 Single-item instuments such as visual analogue fatigue scales provide easy

approaches to standardised screening of fatigue intensity,22,23 while more complex instruments such as the Cancer Fatigue Scale,24 or Multidimensional Fatige Symptom Inventory25 provide opportunity for in-depth assessment of fatigue across all its dimensions. As fatigue is a subjective sensation, one of the most clinically useful ways to measure it is through the use of symptom diaries, which have been shown to be an efficient way to recognise the severity, pattern, and impact of cancer-related fatigue experienced and reported by individuals.26 Despite a recognition of the prevalence of fatigue as a consequence of cancer and its treatment, little is known of the meanings inherent for the individuals experiencing it and the families and professionals witnessing it. With a few exceptions, little has been documented of the experience of living with cancer-related fatigue.9,27–30 In a phenomenological study undertaken to describe the experiences of six individuals with chemotherapy-induced fatigue, Pearce and Richardson found that psychological and emotional distress were more commonly reported consequences of fatigue than were physical manifestations.9 They report one patient’s experience of

Fatigue

471

Table 19.1 Some descriptions of the fatigue of advanced cancer by patients, family members, and friends Patient

Patient subjective descriptors

Relative or friend descriptors

David

I just feel exhausted, no energy to do anything, you can sleep anytime.

Just more and more tired, and losing weight, and not doing anything (Jennie, David’s wife).

Michael

It’s like you’re so heavy, drained of energy.

it’s just cut him off from everybody because it’s too much of an effort, he’s got no energy to spare (Judith, Michael’s wife).

Ruth

Some days I don’t think I can physically get myself up out of bed, and I’ve got no energy.

I fell for her so much because she wants to be busy, to see friends, but she’s exhausted, just exhausted (Francis, Ruth’s friend).

Beth

I feel so tired but I want to be able to get up but I feel I physically can’t

Some days you can almost feel the tiredness, it’s so draining (Howard, Beth’s husband).

Allan

It’s so heavy, like a weight coming down on you.

He’s just not the same person, always busy, but he tells me it’s like a weight on him, and I think I can understand, like after I had an operation once, but I think it’s very different too (Sandra, Allan’s wife).

Enid

It’s a terrible tiredness, it makes you feel exhausted.

She’s got half, well not a quarter, of the energy she used to have, no get up and go (Frank, Enid’s friend).

feeling extremely depressed and of having almost suicidal thoughts during her chemotherapy. She made sense of these extremely distressing emotions by stating: ‘I think it may have been the realisation of my illness for the first time’. Other studies have found that physical limitations imposed by the fatigue are more commonly referred to.30 Similarly, relatives and friends tend to describe the impact of fatigue in physical terms. Krishnasamy undertook a detailed case study of 15 patients with advanced cancer who were experiencing fatigue.12 The study also involved interviews with nominated friends or relatives and health professionals, and a case note analysis. Table 19.1 shows examples of these patients’ and family members’ descriptions of the fatigue accompanying advanced cancer. The meanings inherent in these descriptions suggest that fatigue is much more than simply a physical problem; there are clear emotional, psychological, and social consequences of fatigue. This presents nurses with a considerable challenge, where the language used to describe the fatigue experience, especially within the last months of life, may convey little of its psychological distress. This remains hidden, and therefore nurses’ ability to support patients experiencing distress will be limited.

Fatigue continues to be for the greater part a ‘socially invisible’ consequence of cancer,31 the experience of which is far more complex than simply a lack of visibility.32 It contributes to a complex world in which illness is a product of personal idealisation and social construction. It has a profound effect on an individual’s ability to live a ‘normal life’, and their perception of self. All aspects of life may be affected, forcing withdrawal from family, work, social, and recreational activities, all of which may previously have been powerful in reinforcing feelings of self-worth and self-esteem. As a consequence of this forced withdrawal from daily life, intense feelings of isolation and lack of motivation to continue to try to undertake normal functions have been described as a result of fatigue following chemotherapy.9 Similarly, fatigue resulting from breathlessness has been found to cause withdrawal and isolation.33 This may be especially true with tumours associated with extreme fatigue such as mesothelioma. Krishnasamy12 commented as follows in her research field notes after an interview with a gentleman with small-cell lung cancer: It seems to me that he felt the illness didn’t show tiredness to begin with, he talked about things getting

472 The management of cancer-related problems worse, of wanting to do things but not being able, I could feel his sense of dismay, knowing that there was more to come.

The consequences of social definition, interpretation, and judgement of obscure or ‘invisible’ phenomena such as fatigue34 are powerfully demonstrated in this description of the impact of chronic disability:35 It was not just that people acted differently towards me, but rather I felt differently towards myself . . . it [illness] left me feeling alone and isolated despite strong support from family and friends . . . a diminution of everything I used to be [pp.71–76].

Evidence from the cancer literature suggests that fatigue has been hidden from the consciousness of well-meaning professionals and researchers, with little appreciation of the consequences of its obscurity for patients and relatives, or for the development of true patient-centred care: One cannot separate life experience from a person’s unique interpretation of his or her illness and the ability and desire to get well. Expressions of hope, love, anger, fear, and loss provide the nurse with a lived dialogue, and offer the opportunity for interpretation of events in a way that has particular meaning for the patient.36

Further exacerbating nurses’ inability to help patients and their families to manage cancerinduced fatigue is a lack of understanding of helpful behaviours identified by patients themselves. Although some work is now emerging within the field of chemotherapy- and radiotherapy-induced fatigue, much remains to be explored.37–39 Box 19.1 lists activities reported as being helpful in alleviating fatigue. Few of these interventions have been evaluated through empirical research studies. Nevertheless, these accounts provide invaluable insight and information for planning future nursing intervention studies. A comprehensive understanding of the possible causes and contributing factors of fatigue will lead to a precise nursing diagnosis.17 At present, this is unlikely, as much research has yet to be undertaken before the nature of the relationship between factors contributing to fatigue and the resultant subjective experiences can be understood.

Box 19.1

Strategies in alleviating fatigue

Helpful strategies identified by patients receiving chemotherapy and radiotherapy2,40,41 • Resting or sleeping during the day • Prioritise activities • Reading/listening to the radio/watch television • Walking/gentle exercise • Relaxation/massage • Learning coping skills, e.g. goal planning, activity pacing • Maintaining a diary or journal to map patterns of fatigue • Information seeking • Boosting nutritional intake • Quiet or stimulating environment • Social support, being with family or friends • Effective management of physical symptoms, e.g. pain, nausea. Helpful strategies identified by patients experiencing the fatigue of advanced cancer, and their relatives, friends, and professional carers • Talk to someone about it – tell them how awful it is • Help to give it a language you can work with • Help family and friends understand it • Help patients describe the fears and meanings associated with the fatigue of dying.

Figure 19.2 shows the complexity of the variety of factors thought to influence fatigue in cancer. Patients treated with radiotherapy and chemotherapy often describe feelings of general malaise, incorporating feelings of lack of energy and tiredness. Between 65% and 100% of patients receiving radiotherapy as a treatment for cancer experience fatigue, with the most severe sideeffects occurring during the last week of treatment.4,17,42 For many, it may continue to be a problem for several months after treatment has ended.17 Studies involving patients receiving chemotherapy for a variety of different types of cancer report incidences of fatigue ranging from 59% to 82%.43 There is considerable evidence documenting the occurrence of fatigue after surgery;44 this may be especially problematic where adjuvant chemotherapy or radiotherapy may have to be administered prior to, or immediately following surgery. Surgical procedures performed as pallia-

Fatigue Fatigue is often viewed as a symptom of anxiety and depression.10,38 However, the nature of the relationship between fatigue, depression, and anxiety remains unproven.

Accumulation of toxic waste products secondary to radiotherapy, chemotherapy and immunotherapy. 37

Active tumour growth, infection, fever, or surgery all contribute to fatigue. Tumoursecreted products, hypercalcaemia, hyponatraemia, hypoglycaemia, paraneoplastic and endocrine disturbances are all associated with the occurrence of fatigue. Activation of macrophages, and secretions of cytokines and lymphokines are associated with the fatigue of advanced cancer.37,39

Disturbance of sleep pattern and sleep deprivation result in increased fatigue.39

Inactivity and over-exertion have been identified as causes of fatigue in patients with cancer.38,39

Antibiotics, antidepressants, antianxiety agents, and longacting sleeping agents all cause fatigue.5

The hypothesis that prolonged stress causes fatigue can readily be applied to people with cancer who experience extreme stress for prolonged periods of time.5

Problems with relationships and alterations in social roles all impact negatively on selfesteem and feelings of wellbeing.42

Studies exploring a relationship between anaemia and fatigue in patients with cancer have failed to show a consistent relationship between them. 30

Anorexia, cachexia, nausea, and vomiting are commonly associated with loss of energy and fatigue.39

473

Fatigue may be exacerbated at these crisis points, such as the period around waiting for results of diagnostic tests, recurrence of disease, or commencement of new treatments.

Pain, nausea, vomiting, and constipation all contribute to the onset and subjective perception of fatigue.1

Grief, loss, and bereavement are associated with feelings of increased fatigue.10

Figure 19.2 The complexity of fatigue in cancer.

tive interventions for patients who may have already undergone months, even years, of anticancer treatment may confer considerable relief of acute symptoms, but at the expense of exacerbating profoundly debilitating fatigue.

Successive reports of the symptoms of advanced cancer suggest that fatigue is experienced by between 50% and 75% of patients.45 Despite its prevalence, the impact of the fatigue of advanced cancer continues to be poorly understood as

474 The management of cancer-related problems

papers referring to it focus on a physiological consideration of asthenia. Asthenia is a medical term used to describe pathological fatigue associated with various diseases, and in particular with acute and chronic infections, as well as the fatigue of advanced cancer. It is described as having two predominant symptoms – fatigue and generalised weakness – but no recognised body of knowledge about its aetiology or treatment currently exists.45,46 Research to date has failed to differentiate between fatigue or tiredness as a component of cancer treatment, and fatigue or tiredness as a facet of advanced, terminal illness. The ways in which fatigue is expressed and experienced are only just beginning to be explored. Fatigue as a feature of depression is one such area.47 The perceptions of distress caused by fatigue and the intensely personal meanings attached to the phenomenon may play a significant part in altered mood state. Cimprich concluded that subjects who report a depressed mood state tend to have lower self-ratings of attentional functioning than those with a more positive mood state.48 A relationship between perceptions of distress caused by unrelieved symptoms, and alterations in mood state is thought to exist.49 The importance of working with patients to explore the meanings conferred by them onto their fatigue is therefore further supported. An in-depth interview study of 20 patients receiving a variety of ongoing treatments for cancer suggested that affective expressions of fatigue appeared to be strongly interwoven with its physical dimensions, leading us to question whether a factor such as sadness leads to tiredness (or vice versa), which then leads to decreased motivation and inactivity (or vice versa), with the inactivity then leading to sadness (or vice versa).30 As nurses, we are ideally placed to begin to explore some of these fundamental problems with our patients. The purpose of interventions targeted at cancerrelated fatigue has been defined as facilitating patients adaptation to and understanding of it by: • reducing the actual level of patients’ fatigue by treating factors known to increase it, such as poor control of other symptoms

• reducing the impact of fatigue on patients’ lives so that individuals can engage in activities they value • reducing the distress associated with fatigue in order to enhance patients’ quality of life.40 There is currently little research to support specific interventions for managing fatigue induced by cancer treatments, and some of the most common interventions, such as the suggestion of rest, are based on little or no scientific evidence and may in fact prove to be detrimental.50 Winningham warns that ‘unnecessary bed rest and prolonged sedentarism can contribute significantly to the development of fatigue and may result in rapid and potentially irreversible losses in energy and functioning’.50 Improved psychological status, decrease in fatigue, and increased feelings of vigour have been reported in groups of women with breast cancer following initiation of exercise.51,52 By far the most convincing evidence to support a clinical intervention for fatigue includes data from a series of robust studies of exercise across differing cancer populations and with people of varying disease stages. The benefits of participation in exercise programmes have been demonstrated to be: • enhanced quality of life • increased exercise and activity tolerance without compounding fatigue • increased functional capacity and physical performance • greater feelings of control • decreased perceptions of fatigue • enhanced psychosocial well-being.41,52–54 Energy conservation, enhancing energy sources, and preventing energy waste are three potential strategies for managing fatigue identified in the literature. Vincent suggests that a multimethod fatigue therapy programme, including energyconservation activities, a planned exercise programme, stress reduction instruction, and nutritional counselling, may prove to be especially helpful for people with chronic fatigue.55 Stress management and energy conservation appear to be the two most widely reported facets of care currently employed. Stress management has been

Fatigue

defined as incorporating ‘counselling’ (facilitating a trusting relationship with the person with cancer), patient education, meditation, exercise, muscle relaxation, biofeedback, time management, and diversional activities, e.g. games, music, or reading.6 Energy conservation focuses attention on the value of rest, setting priorities in valued activities and roles, and delegating tasks.6,54 There is some evidence of the potential benefits of exercise and energy-conserving strategies to patients with advanced cancer,54 but these interventions may prove to be of little relevance to this group of patients unless provided alongside in-depth emotional support: She told me it’s no good all the things that used to help don’t now. She listed lots of things like activity pacing and goal planning, although she didn’t call them that, but they just didn’t work for her anymore.12

Activity pacing, goal setting, and identification of priority activities have repeatedly been identified as potentially helpful interventions to manage fatigue.2 However, the unpredictability and severity of the fatigue experienced by patients with advanced cancer may mean these interventions may prove to be less effective with this group. Further research is needed. For those experiencing chemotherapy- and radiotherapy-related fatigue, anticipating when fatigue is most likely to occur may allow forward planning. Activities can then be planned to avoid high fatigue times; routine rest periods can be set and requests for help with daily activities targeted effectively for patients and their families. Fatigue following radiotherapy has been found to occur most often in the afternoon, and planning for a nap or rest periods at that time can be helpful.10 Work by Bredin et al., evaluating a nursing approach to managing breathlessness for patients with advanced lung cancer, presents as one of its therapeutic interventions the need to be able to help patients to plan and organise their days around prioritised activities.56 The notion of balancing daily activities in relation to a ‘breathing cost’ may have an important contribution to make to the development of a nursing strategy for helping patients to live with the fatigue of advanced cancer, where each activity incurs an ‘energy cost’. One of the key therapeutic aspects of their intervention is

475

a commitment to explore the existential meaning of the cancer and its many ramifications. If we accept that caring is attending to a person’s wholeness,57 we must develop the skills to work with individuals in such a way that phenomena such as fatigue cannot be reduced to specific component parts. For individuals who experience cancer-related fatigue, it mediates between the ‘I’ of pre-cancer person and the ‘me’ as cancer patient. It becomes a representation of self:35 . . . there is another aspect of my fatigue that cannot be eased by rest. This is a sense of tiredness and ennui with practically everything and everybody, a desire to withdraw from the world, to crawl into a hole and pull the lid over my head [p. 77].

References 1. Nail L.M. (2002). Fatigue in patients with cancer. Oncology Nursing Forum 29, 537. 2. Piper B., Lindsay D. and Dodd M. (1987). Fatigue mechanisms in cancer patients: developing a nursing theory. Oncology Nursing Forum 14, 17–23. 3. Carpenito L. (1995). Fatigue. In Carpenito L. (ed.) Handbook of Nursing Diagnosis, 5th edition. Philadelphia, PA: Lippincott. 4. Haylock P. and Hart L. (1979). Fatigue in patients receiving localised radiation. Cancer Nursing 2, 461–467. 5. Varricchio C. (1985). Selecting a tool for measuring fatigue. Oncology Nursing Forum 12, 122–127. 6. Aistars J. (1987). Fatigue in the cancer patient: conceptual approach to a clinical problem. Oncology Nursing Forum 14, 25–30. 7. Pickard-Holley S. (1991). Fatigue in cancer patients. A descriptive study. Cancer Nursing 14, 13–19. 8. Armes J. (1995). Cancer Patients’ Experiences of Fatigue in Cancer. BSc dissertation, University of Hull. 9. Pearce S. and Richardson A. (1996). Fatigue in cancer: a phenomenological perspective. European Journal of Cancer Care 5, 111–115. 10. Ferrell B., Grant M., Dean G., Funk, B. and Ly J. (1996). ‘Bone tired’: the experience of fatigue and its impact on quality of life. Oncology Nursing Forum 23, 1539– 1547. 11. Ream E. and Richardson A. (1996). The role of information in patients’ adaptation to chemotherapy and radiotherapy: a review of the literature. European Journal of Cancer Care 5, 132–138. 12. Krishnasamy M. (1997). Exploring the nature and impact of fatigue in advanced cancer. International Journal of Palliative Nursing 3, 126–131.

476 The management of cancer-related problems 13. Magnusson K., Moller A., Ekman, T. and Wallgren A. (1999). A qualitative study to explore the experience of fatigue in cancer patients. European Journal of Cancer Care 8, 224–232. 14. Holley S. (2000). Cancer-related fatigue. Suffering a different fatigue. Cancer Practice 8, 87–95 15. Grandjean A. (1968). Fatigue. Its physiological and psychological significance. The Ergonomics Research Society 11, 427–436. 16. Cimprich B. (1992). Attentional fatigue following breast cancer surgery. Research in Nursing and Health 15, 199–207. 17. Gall H. (1996). The basis of cancer fatigue: where does it come from? European Journal of Cancer Care 5(suppl. 2), 31–34. 18. Nail L. and King K. (1987). Fatigue. Seminars in Nursing Oncology 3, 257–262. 19. Portenoy R. and Itri L.M. (1999). Cancer-related fatigue: guidelines for evaluation and management. Oncologist 4, 1–10. 20. Cella D., Davis K., Breitbart W., Curt G. and The Fatigue Coalition. (2001). Cancer-related fatigue: prevalence of proposed diagnostic criteria in a United States sample of cancer survivors. Journal of Clinical Oncology 19, 3385–91. 21. Sadler I.J., Jacobsen P., Booth-Jones M., Belanger H., Weitzner M.A. and Fields K.K. (2002). Preliminary evaluation of a clinical syndrome approach to assessing cancer-related fatigue. Journal of Pain and Symptom Management 23, 406–16. 22. Wu H.S. and McSweeney M. (2001). Measurement of fatigue in people with cancer. Oncology Nursing Forum 28, 1371–84. 23. Glaus A. (1998). Fatigue in patients with cancer. Analysis and assessment. Recent Results in Cancer Research 145, 1–172. 24. Okuyama T., Akechi T., Kugaya A., Okamura H., Shima Y., Maruguchi M., Hosaka T. and Uchitomi Y. (2000). Development and validation of the cancer fatigue scale: a brief, three-dimensional, self-rating scale for assessment of fatigue in cancer patients. Journal of Pain and Symptom Management 19, 5–14. 25. Stein K.D., Martin S.C., Hann D.M. and Jacobsen P.B. (1998). A multidimensional measure of fatigue for use with cancer patients. Cancer Practice 6, 143–152. 26. Richardson A. (1995). Fatigue in cancer patients: a review of the literature. European Journal of Cancer Care 4, 20–32 27. Rhodes V., Watson P. and Hanson B. (1988). Patients’ descriptions of the influence of tiredness and weakness on self-care abilities. Cancer Nursing 11, 186–194. 28. Ream E. and Richardson A. (1997). Fatigue in patients with cancer and chronic obstructive airways disease: a

phenomenological enquiry. International Journal of Nursing Studies 34, 44–53. 29. Jamar S. (1989). Fatigue in women receiving chemotherapy for ovarian cancer. In Funk S., Tornquist E., Champagne M. et al. (eds.) Key Aspects of Comfort: Management of Pain, Fatigue and Nausea. New York: Springer, pp. 224–228. 30. Glaus A., Crow R. and Hammond S. (1996). A qualitative study to explore the concept of fatigue/tiredness in cancer patients and in healthy individuals. European Journal of Cancer Care 5(suppl. 2), 8–23. 31. Alonzo A. (1985). An analytical typology of disclaimers, excuses and justifications surrounding illness. A situational approach to health and illness. Social Science and Medicine 21, 153–162. 32. Thorne S. (1993). Negotiating Health Care. The Social Context of Chronic Illness. London: Sage. 33. Brown M., Carrierri V., Janson-Bjerklie S. and Dodd M. (1986). Lung cancer and dyspnoea: the patient’s perception. Oncology Nursing Forum 13, 19–24. 34. Czechmeister C. (1994). Metaphor in illness and nursing: a two-edged sword. A discussion of the social use of metaphor in everyday language, and implications of nursing and nursing education. Journal of Advanced Nursing 19, 1226–1233. 35. Murphy R.F. (1987). The Body Silent. London: W.W. Norton. 36. Ryder R. and Ridley M. (1990). The place from which the patient comes. Journal of Professional Nursing 6, 255. 37. Richardson A. and Ream E. (1997). Self-care activities initiated by chemotherapy patients in response to fatigue. International Journal of Nursing Studies 34, 35–43. 38. Nail L., Jones S., Greene D., Schipper D. and Jensen R. (1991). Use and perceived efficacy of self-care activities in patients receiving chemotherapy. Oncology Nursing Forum 18, 883–887. 39. Graydon J., Bubela N., Irvine D. and Vincent L. (1995). Fatigue reducing strategies used by patients receiving treatment for cancer. Cancer Nursing 18, 23–28. 40. Ream E. and Stone P. (2004). Clinical interventions for fatigue. In Armes J.P., Krishnasamy M. and Higginson I. (eds.) Fatigue in Cancer. Oxford: Oxford University Press, pp. 255–271. 41. Ream E., Richardson A. and Alexander-Dann C. (2002). Facilitating patients’ coping with fatigue during chemotherapy-pilot outcomes. Cancer Nursing 25, 300–308. 42. Kobashi-Schoot J., Hanewald G., VanDam F. and Bruning P. (1985). Assessment of malaise in cancer patients treated with radiotherapy. Cancer Nursing 8, 306–313. 43. Nerenz D., Leventhal H. and Love R. (1982). Factors contributing to emotional distress during cancer chemotherapy. Cancer 50, 1020–1027.

Fatigue 44. Rhoten D. (1982). Fatigue and the postsurgical patient. In Norris C. (ed.) Concept Clarification in Nursing. Rockville, MD: Aspen, pp. 277–300. 45. Bruera E. and MacDonald N. (1988). Overwhelming fatigue in advanced cancer. American Journal of Nursing January, 99–100. 46. Morant R. (1991). Asthenia in cancer patients: a doubleedged inflammatory response against the tumour? Journal of Palliative Care 7, 22–24. 47. Visser M. and Smets E.M.A. (1998). Fatigue, depression and quality of life in cancer patients: how are they related? Journal of Supportive Care in Cancer 6, 101–108. 48. Cimprich B. (1993). Development of an intervention to restore attention in cancer patients. Cancer Nursing 16, 83–92. 49. Love R., Leventhal H., Easterling D. and Nerenz D. (1989). Side effects and emotional distress during cancer chemotherapy. Cancer 63, 604–612. 50. Winningham M. (1991). Walking programme for people with cancer. Getting started. Cancer Nursing 14, 270– 274. 51. Kirshbaum M.N. (2007). A review of the benefits of whole body exercise during and after treatment for breast cancer. Journal of Clinical Nursing 16, 104–121. 52. Mock V., Dow K.H., Mears C.J. et al. (1997). Effects of exercise on fatigue, physical functioning, and emotional

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distress during radiation therapy for breast cancer. Oncology Nursing Forum 24, 991–1000. 53. Dimeo F., Tilmann M., Bertz H., Kanz L. and Mertelsmann J. (1997). Aerobic exercise in the rehabilitation of cancer patients after high dose chemotherapy and autologous peripheral stem cell transplantation. Cancer, 79, 1718–1722. 54. Porock D., Kristjanson L., Tinnelly K., Duke T. and Blight J. (2000). An exercise intervention for advanced cancer patients experiencing fatigue: a pilot study. Journal of Palliative Care 16, 30–36. 55. Vincent L. (1992). Management of fatigue in cancer patients. In Bailey C. (ed.) Cancer Nursing – Changing Frontiers – 7th International Conference on Cancer Nursing, 16–21 August, Vienna, Austria. Oxford: Rapid Communications, pp. 91–94. 56. Bredin M., Corner J., Krishnasamy M. et al. (1999). Multicentre randomised controlled trial of nursing intervention for breathlessness in patients with lung cancer. British Medical Journal 318, 901–904. 57. Picard C. (1991). Caring and the story: the compelling nature of what must be told and understood in the human dimension of suffering. In Gaut D. and Leininger M. (eds.) Caring: The Compassionate Healer. New York: National League for Nursing Press, pp. 89–98.

CHAPTER TWENTY

Breathlessness Christopher Bailey

Common definitions of breathlessness suggest that it is ‘the sensation of difficult breathing’, ‘the sensation of difficult, uncomfortable breathing’,1 ‘an uncomfortable awareness of breathing’.2 Ripamonti and Fusco wisely point out, however, that:2 . . . although everybody has experienced the sensation and has an intuitive understanding of this symptom, there is no universal agreement as to its definition [p.204].

Even more importantly, perhaps, they suggest that breathlessness: . . . is frequently described by patients in terms such as fatigue upon breathing, air hunger, suffocation, choking or heavy breathing that incorporates suffering, and fear and anguish . . . when speaking about ‘their’ dyspnea [p.204].

Ahmedzai, writing in the first edition of the Oxford Textbook of Palliative Medicine, commented that:3 . . . it is helpful to think of dyspnoea as the major part of ‘total respiratory distress’ which would encompass the physical, psychological, and social manifestations [p.352].

In a later edition of the same book, the authors write that:4

A breath is a vital sign of a living creature. When one dies, one expires. A breath, however, serves more than physiological purposes. A sigh often carries unspeakable messages from the inner being. Hence the essence of a breath is filled with physiological, psychological, and spiritual signals [p.587].

Breathlessness accounts for a high proportion of the disability, impaired life quality, and human suffering experienced by people with respiratory disease. It is more than a sensation, and more than unpleasant; because it affects so many aspects of a person’s day-to-day life and experience, it is difficult to think of it as just a symptom. Booth acknowledges that breathlessness is a ‘devastating’ symptom of advanced cancer, and can present such a challenge to those trying to manage or alleviate it that:5 . . . it is not uncommon for even palliative care physicians to feel uncertain about how to manage it and to become pessimistic about the outcome of their therapies [p.304].

Breathlessness causes a great deal of suffering, and though much of the literature on managing it derives from studies of patients with nonmalignant disease, it is a major issue for people with cancer. Data on the prevalence of breathlessness in cancer are complex, however. Twycross and Lack, for example, indicate that some 30% of people

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terminally ill with cancer and 65% of people with lung cancer will experience breathlessness.6 Ripamonti and Fusco found that in advanced cancer patients the prevalence of dyspnoea increases from referral to palliative care services (15–55.5%) to the last week of life (18–79%), with severity reported to be moderate to severe in 10–63% of cases.2 A study by Reuben and Mor in the US showed that 70% of terminally ill cancer patients were breathless at some time in the last 6 weeks of life,7 and in a study of 135 patients with advanced cancer, Bruera et al. found that 55% had a symptom score of ≥30/100 for dyspnoea, arguing that this represents major impairment in function and quality of life.8 Dudgeon et al. found that of a sample of 923 outpatients with cancer, 46% had some degree of shortness of breath, although only 4% had been diagnosed with lung cancer, and only 5.4% had lung metastases.9 People with cancer are often breathless as a result of a specific pathophysiological cause (including obstruction of the superior vena cava or bronchus, lymphangitis, pleural effusion, or cardiovascular complications).10 Treatment should focus on reversible causes where possible, alongside appropriate management of symptoms.11,12 Surgery, radiotherapy, chemotherapy, and administration of steroids, are important treatments for obstruction of the upper airways by primary or secondary tumours.13 Mediastinal obstruction, or obstruction of the bronchus, can be treated with radiotherapy, chemotherapy, and again, steroids. It may be possible to treat obstruction locally with laser therapy, cryotherapy, or stenting.11 Pleural effusions, most common in tumours of the lung or breast, can be drained (although fluid frequently reaccumulates), or pleuradesis performed. If it is not possible to reverse the cause of breathlessness, drug treatment is often seen as the principal means of alleviating the symptom. Lymphangitis, in which the lymphatic system of the lungs is affected by tumour, is unlikely to respond to treatment, but palliation may be achieved by a combination of dexamethasone and oral morphine.13 Thomas and von Gunten suggest that glucocorticoids may be useful for bronchospasm, superior vena cava syndrome, carcinomatous lymphangitis, or radiation pneumonitis; they also

point out that antibiotics may be used if appropriate for infections, and anticoagulants for the prevention and treatment of pulmonary emboli.11 Ripamonti adds that pulmonary infections are in fact responsible for the death of almost half of all patients with advanced cancer.10 Bronchodilators may be useful for patients whose breathlessness is exacerbated by reversible airways disease. Reversibility can be assessed by measuring the patient’s peak expiratory flow rate (PEFR) before and half an hour after a standard dose of a drug such as salbutamol. An improvement of more than 15% suggests that the patient will benefit from the appropriate bronchodilator.13 Respiratory sedatives are often recommended for alleviating breathlessness:3 In the palliation of dyspnoeic patients with advanced cancer, neurological disease, or cardiorespiratory disease, the main benefit comes from the suppression of respiratory awareness [p.361].

Morphine has been the drug most commonly referred to in this respect. While the mode of action of morphine in breathlessness is not well understood, oral morphine has been shown to improve exercise tolerance in patients with chronic obstructive pulmonary disease (COPD).14 Ripamonti suggests, in fact, that most studies of systemically administered morphine show that it has potential benefits in the alleviation of breathlessness.10,15 Nearly 20 years ago, Higginson and McCarthy conducted a study evaluating the work of domiciliary terminal care support teams in Bloomsbury Health Authority in London.16 Fourteen items, agreed by support teams to be independent objectives of care and measures of the condition and further needs of dying patients and their families, were graded on a seven-point scale.16 In all, the symptoms of 86 patients were rated throughout the period that patients were under the care of the support teams. While pain was found to be the most common symptom at referral (41% of patients), assessment scores improved after the first week of care, and in the last week of life. By contrast, the 13 patients with breathlessness at referral all had breathlessness at death. In

480 The management of cancer-related problems

addition, five patients developed breathlessness after referral. Symptom control scores suggested that ‘pain was controlled very early in care, while dyspnoea was not controlled at all’ (p.266). The authors point out that a full range of treatments, including opioids, bronchodilators, anxiolytics, and corticosteroids, was used by the support teams, and acknowledge that:16 . . . results suggest that treatment may not be sufficiently effective. The existing measures may have poor efficacy, or they may be applied too late [p.267].

Ten years later, Edmonds et al. used a similar approach to assess the effect of palliative care teams in controlling symptoms in inpatients at a large London hospital, and in this case found that improvements were achieved in, for example, pain, mouth discomfort, anorexia, nausea, vomiting, constipation, breathlessness, and psychological distress.17 Studies such as that of Higginson and McCarthy have been particularly influential in the development of innovative (especially nonpharmacological) approaches to the management of breathlessness in lung and other cancers.16 Chest physiotherapy is usually seen as alleviating breathlessness by removing excess secretions, but techniques of breathing control have also been developed within physiotherapy to avoid breathlessness at rest or on exertion. Breathing control involves relaxing the upper chest and shoulders, and breathing at the normal rate using the lower chest (this is sometimes referred to as ‘diaphragmatic breathing’).18 Gallo-Silver and Pollack provide helpful guidelines on how to practise using the diaphragm during breathing, which can be summarised as:19 • recline in a comfortable position • breathe in a natural way (possibly in through nose, out through mouth) • place a small object (e.g. book) on your tummy • place hands at sides • while breathing, focus on the object on your tummy • see if it rises as you breathe in, and falls as you breath out

• practise making it rise and fall as you breathe in and out (see p.269). The aims of breathing retraining are to: • promote a relaxed and gentle breathing pattern • minimise the work of breathing • establish a sense of control • improve ventilation at the base of the lungs • increase the strength, co-ordination, and efficiency of the respiratory muscles • maintain mobility of the thoracic cage • promote a sense of well-being. Breathing control can be used to climb stairs, breathing in as one step is climbed, and out as the next is climbed, and walking at a slightly slower pace, reducing the degree of breathlessness. The technique can also be applied on hills or slopes, on level ground if necessary, or to recover the breath when stationary. Lower-chest breathing is often grouped together in interventions for breathlessness with pursed lip breathing (PLB).19,20 While PLB is thought to be a more effective pattern of respiration, it probably does not decrease the work of breathing. The source of symptom benefit from PLB may be due to decreased airway collapse, enlarged tidal volume, and slowed respiration.21 Often, breathlessness can lead a person to breathe with the upper chest and shoulders in a rapid, shallow manner.22 Gasping for air increases the resistance to flow, which increases energy expenditure. Using accessory respiratory muscles, which are not as efficient as primary respiratory muscles, leads more quickly to fatigue, and to greater oxygen consumption. As the rate of breathing increases, the depth often decreases, creating a larger dead space in the lungs and reducing the amount of oxygen available to the body. In effect, this response to inadequate ventilation actually places even greater demands on the respiratory system. Breathing retraining is intended to encourage as efficient a breathing pattern as possible, and to reverse as far as possible the ineffective response that has developed.

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Research study 20.1 Roberts D.K., Thorne S.E. and Pearson C. (1993). The experience of dyspnoea in late-stage cancer: patients’ and nurses’ perspectives. Cancer Nursing 16, 310–320.23 Arguing that there were gaps in our knowledge of the management of breathlessness in cancer, and that to understand breathlessness we must appreciate it from the point of view of those who are experiencing it, Roberts and colleagues set out in this study to answer the question, What is the meaning of dyspnoea in late-stage cancer? In order to do this, they employed a wide range of data-collection methods, including self-report patient surveys of the frequency and nature of breathlessness, chart audits, interviews with patients and nurses, participant observation, questionnaires (e.g. about the nature, extent and context of breathlessness, and related symptoms), and specially adapted visual analogue scales (e.g. to measure usual severity and peak severity). The intention in using this extensive range of methods was to provide ‘a richer and more accurate description and interpretation of the phenomenon than would any one data source alone’ (p.312). A sub-sample of 10 patients with a range of different cancers (lung, breast, throat, stomach, prostate and kidney) were interviewed, together with 12 nurses. Roberts and her colleagues identified three key themes from the interview data: barriers in daily life, coping in isolation, and inconsistent understanding (i.e. shown by health care professionals of experience of breathlessness). Breathlessness was a barrier to activity ‘invading’ daily lives (p.315); there were few if any recognised strategies for coping with breathlessness – patients ‘figured it out for themselves’ (p.315); discrepancies in nurses’ interpretations of the frequency, effects, and implications of breathlessness, and differing views of the effectiveness of various management strategies, were common. They conclude that the study shows patients coping ‘in isolation’ with ‘an extremely troublesome symptom’ (p.318) and that: understanding the meaning of the symptom for the patient is a foundation for effective management [p.319]. All in all, this study provides a wealth of insight and information into the nature and impact of breathlessness in cancer, and has had strong influence upon subsequent work to develop non-pharmacological interventions for this distressing experience.

Breathlessness can be a frightening experience: anyone who has experienced, say, asthmatic attacks, or altitude sickness, or, indeed, anyone whose children have experienced breathlessness can testify to that. The experience of people whose breathlessness occurs in the context of a potentially life-limiting disease such as cancer can be extraordinarily vivid and powerful. As Roberts et al. pointed out:23 . . . patients’ interpretations of what the signal of shortness of breath meant in relation to their disease seemed . . . the predominant influencing factor in shaping their experience with dyspnoea [p.315]. The sensation aroused by dyspnoea created a barrier to comfort and peace of mind . . . patients lived with the life-threatening potential of breathlessness [p.311].

She describes one woman who avoided any activity that made her aware of her breathing, despite being able to bath, walk, and dress independently, because she believed that being breathless would make her cancer spread. Breathlessness can represent a threat to life itself: It starts to feel like you’re choking. Someone’s taking the breath away from me [p.314]

and: I panic a bit sometimes, because deep down I know that [this breath] could be my last one . . . It’s an awful feeling [p.314].

Steele and Shaver also identify that breathlessness constitutes a serious threat:24 . . . the experience of dyspnoea incorporates cognitive interpretation of the event as threatening

and suggest that this is why activity is circumscribed: . . . motivation to alleviate threat through behaviours such as slowing or cessation of activities that evoke dyspnoea would be expected [p.67].

While it is understandable that both patients and carers respond to breathlessness in this way,

482 The management of cancer-related problems

Box 20.1

A programme of research into managing breathlessness in lung cancer

Corner J., Plant H. and Warner L. (1995). Developing a nursing approach to managing dyspnoea in lung cancer. International Journal of Palliative Nursing 1, 5–11.25 • Outlined approach and model for working with breathlessness in lung cancer Bailey C. (1995). Nursing as therapy in the management of breathlessness in lung cancer. European Journal of Cancer Care 4, 184–190.26 • Focused on broader rehabilitative goals of therapy, including managing function and psychosocial burden Corner J., Plant H., A’Hern R. and Bailey C. (1996). Non-pharmacological intervention for breathlessness in lung cancer. Palliative Medicine 10, 299–305.27 • Reported findings of first randomised control trial into non-pharmacological intervention (n = 34) Corner J. and O’Driscoll M. (1999). Development of a breathlessness assessment guide for use in palliative care. Palliative Medicine 13, 375–384.28 • Development of breathlessness assessment guide O’Driscoll M., Corner J. and Bailey C. (1999). The experience of breathlessness in lung cancer. European Journal of Cancer Care 8, 37–43.29 • The experience of breathlessness in lung cancer – study of 52 patient records Bredin M., Corner J., Krishnasamy M. et al. (1999). Multicentre randomised controlled trial of nursing intervention for breathlessness in patients with lung cancer. British Medical Journal 318, 901–904.30 • Multicentre randomised controlled trial (RCT) of nursing intervention for breathlessness in lung cancer (n = 119) Plant H., Bredin M., Krishnasamy M. and Corner J. (2000). Working with resistance, tension and objectivity: conducting a randomised controlled trial of a nursing intervention for breathlessness. NT Research 5, 426–436.31 • Interview study with specialist nurses participating in RCT Froggatt K., Corner J. and Bredin M. (2002). Dissemination and utilisation of an intervention to manage breathlessness: letting go or letting down? NT Research 7, 223–232.32 • Critical analysis of methods of disseminating findings from studies of intervention for breathlessness

the objective of therapy remains to roll back inactivity, or loss of function, and to work with the heavy psychological burden that is so influential in restricting freedom. Our own work has focused on developing and evaluating an intervention that addresses both the functional and the psychosocial aspects of breathlessness (see Box 20.1). This work had its early origins in a recognition of the importance of an ‘ecologic’ model of dyspnoea, ‘a framework for guiding nursing science’, which:

Corner et al. proposed an ‘integrative model’, in which the emotional experience of breathlessness is considered as inseparable from the sensory experience and the biological mechanisms.25 This model was used as the basis for a non-pharmacological intervention for breathlessness, developed for the outpatient setting, which draws on breathing retraining, relaxation, and biofeedback techniques. The intervention, which was the subject of a randomised controlled trial (RCT),27 consisted of the following strategies:

. . . unlike the linear, reductionist biomedical model with notions of cause, disease, and cure . . . acknowledge[s] the interactive effects of multivariate individual and environmental influences upon individual adaptations and health outcomes.24

• detailed assessment of breathlessness • exploration of meaning of breathlessness • advice and support on ways of managing breathlessness • breathing retraining

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• goal setting • meditative and progressive muscle relaxation • early recognition of need for other interventions. This study showed that using the intervention led to important improvements in participants’ experience of breathlessness, including: • breathlessness at worst: improved by 35% • distress caused by breathlessness: improved by 53% • functional capacity: improved by 17% • difficulty in performing activities of daily living: reduced by 21%.27 From the beginning, it was anticipated that the meaning of breathlessness in the context of severe, life-threatening illness would be an important factor in patients’ experiences, and that managing breathlessness would involve working with its meaning. A small study, conducted in parallel with the main evaluation study, was developed to record and assess nurse-researchers’ perceptions of the intervention.26 Using an exploratory single case design, interviews were conducted with the three nurse-researchers working in the outpatients’ clinic at that time.33 Evidence from interviews with the nurseresearchers suggested that the deep emotional consequences of breathlessness in lung cancer have a profound influence on how the intervention is realised in practice. The value of attention paid to psychosocial issues was at least as great as the value of breathing retraining. As one nurse-researcher said: . . . the [practical] framework that we give people, actually helps them cope, and that has to . . . go alongside talking about emotional issues, and the difficulties . . .

Referring to a man she was seeing in the clinic, she gave an example of how this worked in practice: . . . last week he was talking about . . . walking up the car park . . . it goes up a bank . . . it sort of steps up. Well, for all the people who attend it’s a problem, because they have to park their cars on the third level,

and having talked about the difficulties of any kind of incline they then have to climb up to get back to their car. So I walked back to his car with him, slowly, to see how it was for him . . . we had this little conversation while I went up to the car with him . . . the fact that I walked to the car with him obviously means something enormous . . . he actually lives with his son, who he feels a tremendous burden on . . . I always got a feeling . . . that they feel no one really cares about them . . . I think this was like he did matter to me . . . almost a confirmation of it, ‘cos I bothered to walk up to his car with him . . .

The opportunity to accompany this man to the car park was a means of rehearsing an aspect of breathing retraining in a practical situation. It was also a means of working socially with a client whose sense was that his illness had made him a burden and that he was therefore not entitled to make claims upon people’s time and care. Being a burden, and being beyond the reach of care, are part of illness and breathlessness, and are approached, with the physical experience of breathlessness, as a single, integrated phenomenon. The same nurse-researcher refers to her clients’ feelings of loss of worth again in another interview: . . . there is . . . this need to give something back . . . it’s almost self-respect . . . to say that they are still wanted and needed . . . I had a really long conversation with him telling me the most economical way to use my washing machine . . . and another time he told me about cooking nectarines, well I thought it was just so important to listen to that.

Breathlessness can restrict our ability to carry out our customary daily personal and work-related activities, and can leave us feeling disconnected from the social world, which in other circumstances would be a vital source of pride and self-esteem. As Charmaz points out:34 Chronically ill persons frequently experience a crumbling away of their former self-images without simultaneous development of equally valued new ones. The experiences and meanings upon which these ill persons had built former positive self-images are no longer available to them [p.168].

The nurse-researcher referred to above is addressing some of the overall effect of breathless-

484 The management of cancer-related problems

ness when she responds to her client’s wish to pass on his domestic skills. The physical losses caused by breathlessness, evident in the man’s difficulty in walking to his car, go hand in hand with the social ones, played out at home and in his relationship with his son; together, they constitute lost elements of a ‘positive self-image’, and it is towards this that the nurse is directing her attention and support by reciprocating her client’s offer of insight into domestic and culinary skills. Night-time panic attacks exemplify the way in which breathlessness is not a sensation, not an emotion, and not a physical process, but all three of these, at least, and also a dynamic, fluctuating state. Responding therapeutically to panic attacks makes great demands on both the client, and the nurse, and organisations working with people with cancer have developed a number of strategies for managing panic, including the ‘panic hand’.35 Panic in breathlessness is an escalating predicament in which normal breathing patterns collapse, awareness is acute, and fear takes hold. Sleep becomes impossible and panic rises. The essence of panic is that catastrophe appears imminent and inescapable; with breathlessness, panic can frequently revolve around the idea that suffocation and death are close. One nurse-researcher working with people in one of our early studies of nurse-led clinics described her client’s experience in this way: . . . his breathing was bad, he used to come in at night with these panic attacks, he couldn’t sleep . . . because he was so frightened, and a lot of the work I did with him was with strategies for coping with the night, and getting to sleep, and ways of calming himself down at night . . . he used to get breathless at night . . . it was just because he would go to bed and think about his breathing and think he wouldn’t be able to breathe and then get in a panic about it . . .

It is, then, appropriate to apply the practical discipline of breathing retraining to a highly charged emotional situation such as this (and it is true to say that part of what the nurse is doing is responding to a pathological process). The nurse, however, is aware and involved in the predicament as a whole, and is called upon to work with a high level of distress.

Fabricius suggests that being ‘with’ and ‘for’ the patient is a therapeutic response to distress:36 . . . by ‘being for the patient’ . . . I mean allowing the patient, to some extent, to use the nurse, psychically, as the sort of object he needs. Often this will be, to use Bion’s term, as a container for whatever of his anxieties are at the moment intolerable to him, and of course this . . . is a maternal function [p.101].

Fabricius points out that nurses are often unable to meet the demands made on them by patients:36 . . . the sheer quantity, as well as force, of the projections that are thrust on them are too much for any human unless she herself is held in a supportive, containing structure [p.103].

She suggests that facilitated small-group meetings for nurses to discuss anything to do with their relationships with patients and the feelings aroused by them represent progress towards such a structure. Franks et al. add that the effectiveness of this type of group work appears to depend on there being a balance between the structure the group provides and space for personal reflection it gives: when we are trying to deal with the anxiety caused by working closely with patients, we need some kind of ‘defence’ against it, and stable, wellfacilitated small-group discussion may be able to provide this.37 In our own work with lung cancer patients with breathlessness, we held structured one-to-one sessions for members of the team to reflect on their experiences of working with patients, which in fact provided a lot of insight into the realities of our work. Johnson and Moore have written insightfully about some of the challenges of working with people with cancer-related breathlessness.38 They point out that in the light of positive findings from studies of a non-pharmacological intervention for breathlessness (see Box 20.1), nurses and others have been encouraged to adopt a similar approach in their own work. Putting this kind of intervention into practice, they believe, is challenging not only because of the kind of organisational change that is required, but also because confidence has to be gained in using the techniques involved, and because existing professional

Breathlessness 485

roles impose a series of limitations. They rightly stress that: In the research studies . . . psychological demands on the nurses using the intervention were acknowledged and access to supervision and support was considered an essential part of the intervention. Nurses worked in pairs and had support from the research team [p.36]

and emphasise that while it may be difficult to arrange, it is nevertheless: . . . imperative . . . that nurses working within clinical practice ensure they have access to a similar level of support and supervision to maintain their own psychological well-being [pp.36–37].

The benefits for people with cancer-related breathlessness offered by the type of non-pharmacological intervention outlined here, and the potential rewards for health care professionals in terms of achieving genuinely therapeutic goals, are, however, substantial, if the challenges of implementing change can be successfully met.39 And in recent years, this has been recognised in the recommendation of such approaches by the National Institute of Health and Clinical Excellence:40 . . . non-drug interventions for breathlessness should be delivered by a multidisciplinary group, coordinated by a professional with an interest in breathlessness and expertise in the techniques (for example a nurse, physiotherapist or occupational therapist). Although support may be provided in a breathlessness clinic, patients should have access to it in all care settings [p.7]

and the Scottish Intercollegiate Guidelines Network:41 Breathlessness clinics led by nurses or physiotherapists should be made available to all lung cancer patients [p.38].

The conceptualisation put forward by Corner et al., which treats the emotional experience of breathlessness as inseparable from the sensory experience and the biological mechanisms,25 challenges us to look outside the neat but limited and impersonal categories represented by conventional symptomatology. We have to develop therapeutic responses that genuinely address the broad range

of needs flowing from the embodied experience of various forms of distress, including consequential social losses and their implications for self-concept and suffering. The nociceptive model described by Steele and Shaver might suggest that one dimension of a phenomenon (distress, for example) can be addressed independently of another (sensation, for example).24 Corner et al., however, suggest that breathlessness should be:25 . . . understood holistically in the context of an individual’s life, illness experience and its meaning [p.6].

Embodied experience is not neatly packaged, and individual ‘items’ of need are not always clearly linked to a discrete and well-defined intervention. Addressing needs as if they were discrete, separate entities, without listening to and working with the whole story, as it were, can leave fundamental fears, distress and suffering relatively untouched. As one nurse-researcher involved in an early study of nurse-led intervention for breathlessness commented: People don’t even know that they’re anxious . . . it’s so much part of your physiological activity that you don’t know what’s doing what . . . it’s impossible to start saying there are components of it, to even talk about components seems to be wrong . . . you have to treat it as a whole experience, and it must have intense meaning to people.

A key part of the response demanded by Corner’s conceptualisation is the ‘containing, supportive structure’ referred to by Fabricius,36 extended by nurse to client and, as importantly, by co-workers and institution to nurse. The questions raised about the practical arrangements required by such a response (raised in one form by Johnson and Moore38) are raised in a slightly different way by Allan in her study of nursing on a fertility unit.42 Nursing care on the unit was ‘good enough’ (a mixture of emotional awareness and emotional distance) Allan suggests, partly because ‘nurses in this setting were not encouraged to recognise feelings arising from their interactions with patients’ and ‘had not been offered clinical supervision’ (p.58), and partly because nurses’ ‘emotional distance or non-caring . . . was a defence against the anxiety caused by

486 The management of cancer-related problems

the pain of infertility’ (p.55). In these circumstances it is, one feels, inevitable that at times ‘patients were left alone in their distress and their feelings denied’ (p.59). Allan’s study leaves us pondering the question of whether ‘good enough’ is, given the constraints and demands upon us, good enough; or whether, given the moral imperatives of caring, a way must be found to establish supportive structures for staff and clients alike so that in health care institutions patients are not ‘left alone in their distress’. Breathlessness is not just a symptom, it is lived experience. For some patients with lung cancer, it is fear of dying, and care in these circumstances might include the kind of supporting structure that allows this to be articulated safely, to become more a part of an unfolding and progressing ‘story’: . . . one lady . . . I turned to put the pulse oximeter, turned it on, and to put it on her, and as I turned my back to her, she said, ‘Am I going to die of this?’ And, I mean the fact that I’d done something, moved away to do something technical and turned my back, allowed her to say the thing that she really wanted to say, and it was about allowing that person to be in a totally private place with someone who appeared to be very comfortable and safe to ask that question of.

For some, breathlessness is panic, and things that cannot be accomplished, and care is tackling panic, and accomplishing some of those things: . . . teaching a few simple strategies to manage those attacks, and techniques and new ways of breathing . . . by the next session . . . he’d only had minor attacks of breathlessness at night, so he was beginning to master these awful panics . . . then . . . teaching a bit more, like how do you use these breathing techniques to manage stairs . . . he could recover quicker at the top by using diaphragmatic breathing . . . timing your breathing while you’re walking . . . talking about sleeping and those sorts of things, and getting a bit further with them about what they both felt about it and the future . . .

Fabricius asks how nurses can be psychotherapeutic, and what hinders them from being so.36 The priorities and ordering of nursing situations, the routine; the way in which ‘symptoms’ are dealt with at a high level of abstraction and distance from the individual; the prevalence of models or algorithms which ‘stand for’ human experiences

without making them real; the splitting of human experience into disembodied parts, setting aside the undisciplined, disorderly whole; all of this stands in the way, provides a means to become detached and to leave potentially painful things untouched. Acknowledgement This chapter is adapted and expanded from ‘Nursing as therapy in the management of breathlessness in lung cancer’, first published in the European Journal of Cancer Care 1995 4, 184–190, with the permission of Blackwell Science Ltd.

References 1. Renfroe K.L. (1988). Effect of progressive muscle relaxation on dyspnoea and state anxiety in patients with chronic obstructive pulmonary disease. Heart and Lung 17, 408–413. 2. Ripamonti C. and Fusco F. (2001). Respiratory problems in advanced cancer. Supportive Care in Cancer 10, 204– 216. 3. Ahmedzai S. (1995). Palliation of respiratory symptoms. In Doyle D., Hanks G. and McDonald N. (eds.) The Oxford Textbook of Palliative Medicine. Oxford: Oxford University Press. 4. Chan K-S., Sham M.M.K., Tse D.M.W. and Thorsen A.B. (2004). Palliative medicine in malignant respiratory diseases. In: Doyle D., Hanks G., Cherny N. and Calman K. (eds.) The Oxford Textbook of Palliative Medicine, 2nd edition. Oxford: Oxford University Press. 5. Booth S. (2006). Palliative care for intractable breathlessness in cancer. European Journal of Cancer Care 15, 303–314. 6. Twycross R.G. and Lack S.A. (1986). Therapeutics in Terminal Cancer. London: Churchill Livingstone. 7. Reuben D.B. and Mor V. (1986). Dyspnoea in terminally ill cancer patients. Chest 89, 234–236. 8. Bruera E., Schmitz B., Pither J., Neumann C.M. and Hanson J. (2006). The frequency and correlates of dyspnea in patients with advanced cancer. Journal of Pain and Symptom Management 19, 357–362. 9. Dudgeon D.J., Kristjanson L., Sloan J.A., Lertzman M. and Clement K. (2001). Dyspnea in cancer patients: prevalence and associated factors. Journal of Pain and Symptom Management 21, 95–102. 10. Ripamonti C. (1999). Management of dyspnea in advanced cancer patients. Supportive Care in Cancer 7, 233–243. 11. Thomas J.R. and von Gunten C.F. (2002). Clinical management of dyspnoea. The Lancet Oncology 3, 223–228.

Breathlessness 487 12. Jennings A.L., Davies A.N., Higgins J.P.T. and Broadly K. (2003). Opioids for the palliation of breathlessness in terminal illness (Cochrane Review). The Cochrane Library, Issue 1. Oxford: Update Software. 13. Cowcher K. and Hanks G.W. (1990). Long-term management of respiratory symptoms in advanced cancer. Journal of Pain and Symptom Management 5, 320–330. 14. Light R.W., Muro J.R., Sato R.I. et al. (1989). Effects of oral morphine on breathlessness and exercise tolerance in patients with chronic obstructive pulmonary disease. American Review of Respiratory Diseases 139, 126–133. 15. Abernethy A.P., Currow D.C., Frith P. et al. (2003). Randomised, double blind, placebo controlled crossover trial of sustained release morphine for the management of refractory dyspnoea. British Medical Journal 327, 523–528. 16. Higginson I. and McCarthy M. (1989). Measuring symptoms in terminal cancer: are pain and dyspnoea controlled? Journal of the Royal Society of Medicine 82, 264–267. 17. Edmonds P.M., Stuttaford J.M. and Penny J. (1998). Do hospital palliative care teams improve symptom control? Use of a modified STAS as an evaluation tool. Palliative Medicine 12, 345–351. 18. Gallo-Silver L. and Pollack B. (2000). Behavioural interventions for lung cancer-related breathlessness. Cancer Practice 8, 268–273. 19. Webber B. (1991). The role of the physiotherapist in medical chest problems. Respiratory Disease in Practice February/March, 12–15. 20. Kersten L. (1989). Comprehensive Respiratory Nursing. Philadelphia, PA: WB Saunders. 21. Mueller R.E., Petty T.L. and Filley G.F. (1970). Ventilation and arterial blood gas changes induced by pursed lips breathing. Journal of Applied Physiology 28, 784–789. 22. Gift A.G., Moore T. and Soeken K. (1992). Relaxation to reduce dyspnoea and anxiety in COPD patients. Nursing Research 41, 242–246. 23. Roberts D., Thorne S.E. and Pearson C. (1993). The experience of dyspnoea in late-stage cancer: patients’ and nurses’ perspectives. Cancer Nursing 16, 310–320. 24. Steele B. and Shaver J. (1992). The dyspnoea experience: nociceptive properties and a model for research and practice. Advances in Nursing Science 15, 64–76. 25. Corner J., Plant H. and Warner L. (1995). Developing a nursing approach to managing dyspnoea in lung cancer. International Journal of Palliative Nursing 1, 5–11. 26. Bailey C. (1995). Nursing as therapy in the management of breathlessness in lung cancer. European Journal of Cancer Care 4, 184–190. 27. Corner J., Plant H., A’Hern R. and Bailey C. (1996). Non-pharmacological intervention for breathlessness in lung cancer. Palliative Medicine 10, 299–305.

28. Corner J. and O’Driscoll M. (1999). Development of a breathlessness assessment guide for use in palliative care. Palliative Medicine 13, 375–384. 29. O’Driscoll M., Corner J. and Bailey C. (1999). The experience of breathlessness in lung cancer. European Journal of Cancer Care 8, 37–43. 30. Bredin M., Corner J., Krishnasamy M. et al. (1999). Multicentre randomised controlled trial of nursing intervention for breathlessness in patients with lung cancer. British Medical Journal 318, 901–904. 31. Plant H., Bredin M., Krishnasamy M. and Corner J. (2000). Working with resistance, tension and objectivity: conducting a randomised controlled trial of a nursing intervention for breathlessness. NT Research 5, 426– 436. 32. Froggatt K., Corner J. and Bredin M. (2002). Dissemination and utilisation of an intervention to manage breathlessness: letting go or letting down? NT Research 7, 223–232. 33. Yin R. (1994). Case Study Research. Design and Methods, 2nd edition. London: Sage. 34. Charmaz K. (1983). Loss of self: a fundamental form of suffering in the chronically ill. Sociology of Health and Illness 5, 168–195. 35. Wessex Cancer Trust. (2002). Coping with Breathlessness due to Cancer. Southampton: Wessex Cancer Trust, Southampton. www.wessexcancer.org (accessed 7 August 2007). 36. Fabricius J. (1991). Running on the spot or can nursing really change? Psychoanalytic Psychotherapy 5, 97–108. 37. Franks V., Watts M. and Fabricius J. (1994). Interpersonal learning in groups: an investigation. Journal of Advanced Nursing 20, 1162–1169. 38. Johnson M. and Moore S. (2003). Research into practice: the reality of implementing a non-pharmacological breathlessness intervention into clinical practice. European Journal of Oncology Nursing 7, 33–38. 39. Hately J., Scott A., Laurence V., Baker R. and Thomas P. (2001). A Palliative Care Approach for Breathlessness in Cancer: a Clinical Evaluation. London: Help the Hospices. 40. National Institute for Clinical Excellence. (2005). Lung Cancer: the Diagnosis and Treatment of Lung Cancer (Clinical Guideline 24). London: National Institute for Clinical Excellence. www.nice.org.uk/guidance/CG24/ niceguidance/pdf/English (accessed 7 August 2007). 41. Scottish Intercollegiate Guidelines Network. (2005). Management of Patients with Lung Cancer: a National Clinical Guideline. Edinburgh: Scottish Intercollegiate Guidelines Network. www.sign.ac.uk/guidelines/published/index.html (accessed 7 August 2007). 42. Allan H. (2001). A ‘good enough’ nurse: supporting patients in a fertility unit. Nursing Inquiry 8, 51–60.

CHAPTER TWENTY-ONE

Wound management Meinir Krishnasamy

In his book The Body Silent, Murphy reminds us that illness is ‘not simply a physical affair . . . it is our ontology, a condition of our being in the world’ (p. 77).1 Illness, especially when it is associated with disfigurement or alterations in body image, confers on people a loss of self-esteem, a stigma, resulting in a ‘spoiled identity’.2 When the disfigurement is associated with the disease of cancer, the potential for negative self-perception through acceptance of a subjectively created or objectively projected spoiled identity is enormous.3 Where self-perception is altered by the presence of a physical wound, whether visible or otherwise, profoundly negative associations may occur. In extreme cases, a person may identify him- or herself with the malignant wound, believing himself to be foul, odorous, or repulsive. The consequences for an individual’s quality of life, self-esteem and well-being are enormous. Skilled technical and physiological knowledge is necessary if avoidable wounds are to be prevented, wounds caused by any number of invasive procedures and treatments are to be managed effectively, uncomplicated wound healing is to be facilitated, or when complete healing is not feasible, if discomfort and distress are to be minimised. Alongside technical proficiency, nurses must also convey compassion (as illustrated in Personal account 21.1).4–6

Personal account 21.16 I was so shocked when I saw the wound, it was leaking and black, and the smell was very strong. As soon as I began to unpack the items on the dressing trolley he fixed his eyes on me, waiting for me to show signs of repulsion, I think. I stopped and asked him if he minded me seeing the wound and him like this. The wound had broken through, out onto his lower abdomen, but the area to be cleaned and dressed spread down to his genital area. He was very thin. He started to tell me how disgusting he found the wound and how he was ashamed of having it on his stomach. His wife sat quietly trying very hard to be absorbed in a book. He talked about it as though it were something alien that had taken over his body. By the time he had finished talking, the technical dressing was over, but the effects of the interaction, of asking him what this wound meant to him were far-reaching. This time became an opportunity for intense personal interaction and over the course of the next ten days, the three of us began to talk about their sadness and fears about the future.

Wound healing Irrespective of the nature or type of wound, the same basic processes are required to bring about wound healing, and yet wound care has altered so

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dramatically over the past 20 years that nurses often feel overwhelmed by the array of dressings and treatments available.5,7 Most products on the market provide passive support for wound healing by creating an environment favorable to repair (that is, clean, moist, insulated, and protected). There are also emerging therapies designed to actively manipulate the repair process. Nevertheless, despite the plethora of dressings and agents available there is very little robust evidence to indicate the most effective ways of managing cancerrelated wounds. Nurses therefore must make product and management decisions based on wound characteristics and response to treatment. The most widely available wound dressings continue to be:8,9 • absorbent dressings – e.g. gauze, gamgee, and lint, are highly absorbent, but have a tendency to adhere to wound surfaces, causing trauma and pain on removal • low-adherence dressings – those that have one non-adherent surface intended for direct contact with the wound. They are for use on minor wounds with minimal exudate • tulle dressings – sheets of gauze impregnated with various amounts of paraffin, antiseptics, or other agents. They too are best used with lowexudate wounds • semi-permeable dressings – clear polyurethane film coated with adhesive. When used with lowexudating wounds, they conform well and allow unimpeded observation of the wound site • polysaccharide dressings – work by exerting osmotic action at the wound surface. They are available as pastes, beads, and ointments and are intended to be used during the inflammatory phase of sloughy or infected wounds • hydrogels – especially suited for use in cavities and are effective débriding/desloughing agents. They provide a cooling action and may reduce pain on contact with the wound surface • hydrocolloids – form a gel, which creates an ideal, moist, wound-healing environment and protect fragile skin and areas of the body affected by urinary or faecal incontinence or frictional forces • silver dressings – release a steady amount of silver to a wound and provide antimicrobial or anti-

bacterial action. They can manage minimal, moderate or heavy exudates depending on which type of dressing is used • alginates – intended for use on moderately or heavily exudating wounds. On absorbing secretions they form a gel, creating optimum humidity and temperature for wound healing • collagens – used for partial- and full-thickness wounds, infected and non-infected wounds, tunnelling wounds and wounds with minimal to heavy exudate. They encourage the deposition and organisation of newly formed collagen fibres and granulation tissue in the wound bed • foam dressings – highly absorbent materials suitable for a wide range of granulating wounds. They provide thermal insulation to the wound, creating a moist healing environment. They may be used in conjunction with topical antibiotics for infected wounds. They may be used as primary or secondary dressings. There are many types of wounds and several methods exist to classify them. However, there is to date no universally accepted classification system and wounds may be described as: • mechanical injuries, incorporating abrasions, lacerations, penetrating wounds, bites, and surgical wounds • burns and chemical injuries, incorporating superficial, deep dermal, and full-thickness thermal, chemical, electrical, and radiation burns • chronic ulcerative wounds, which can be divided into decubitus ulcers (pressures sores), leg ulcers (venous, ischaemic, or traumatic), and ulcers arising from systemic infections, radiotherapy, or malignant disease8 • acute wounds, which include surgical and traumatic wounds • chronic wounds, which include the ulcers, malignant and fungating wounds.5 Patients with cancer are at risk of developing any one of these many types of wounds.

Principles of wound healing Damaged tissue passes through a number of phases of repair following injury. Inflammatory, destructive, proliferative, and maturation phases are

490 The management of cancer-related problems

characterised by numerous overlapping processes involving cell regeneration and proliferation, and collagen production.9 In the surgical management of wound healing, four types of repair are recognised and a brief overview of the types of wound healing and phases involved is outlined below.8 Primary closure

Clean surgical wounds or newly inflicted traumatic injuries are managed by primary closure. When wounds heal by primary closure, granulation tissue and scar formation are visible. An acute inflammatory phase begins within a few minutes of injury, resulting in constriction of smooth muscle, reduced blood flow, and aggregation of collagen and platelets at the wound site.10 Activation of the clotting mechanism occurs and results in the production of a clot or plug, which brings about haemostasis, while supporting and strengthening the injured tissue.8 As the capillary walls at the damaged site become permeable, serum, leucocytes, erythrocytes, and antibodies pass into the wound. During the destructive phase of wound healing, and within hours of clot formation, polymorphonuclear leucocytes and macrophages begin the process of removing debris and bacteria from the wound site.8,9,11 After a period of about 24 hours, epidermal cells begin to grow across the surface of the wound underneath the now dried scab, and depending on the nature and size of the wound, this process will continue for 2–3 days. Open granulation

When drawing the edges of a wound together immediately is inadvisable, for example following major surgery, or when there is a considerable risk of infection, open granulation becomes the healing method of choice.8 Open granulation is by necessity a slower process than primary closure, involving the progressive filling of the wound with granulation tissue. Granulation tissue is composed of collagen, a complex mixture of proteins and polysaccharides, salts, and other colloid materials.8 When the wound cavity is almost filled with granulation tissue, the epithelium around the wound margin becomes active and strands of collagen are drawn across the surface of the wound.11 This early collagen is very delicate and the wound needs to be stabilised to prevent damaging its delicate

structure. Collagen growth is dependent upon a good supply of oxygen and an adequate supply of vitamin C.12 Delayed or secondary closure

Delayed primary closure occurs following infection, breakdown of the healing process, or when there is a poor blood supply.8 Delayed primary closure involves leaving the wound open for 3–4 days before closure is undertaken, or involves resuturing of a previously closed wound. During the maturation phase of healing, fibroblasts begin to leave the wound, and as a result of dehydration and reorganisation of collagen fibres, the edges of the wound are drawn together through a process of contraction.9,12 However, open granulation and contraction may be unacceptable where the scar left by the injury is to be visible, as contraction, especially of a facial wound, may result in distortion of surrounding features. Grafting or flap formation

Grafting involves the removal of a portion of skin from one anatomical site, usually the thigh or buttock, to be placed onto a wound elsewhere. Despite offering rapid potential for healing, grafting results in the patient having two wounds instead of one. There is also considerable anecdotal evidence that donor sites cause greater pain than the original wound. Skin flaps involve raising a portion of skin and subcutaneous tissue and rotating it to cover an area of skin loss.8 Adequate blood supply, and prevention of infection and stress at the graft or flap site are essential factors in the success of these procedures.

Assessment Nursing management of wounds will only be effective if based on informed decisions following a thorough assessment of objective and subjective information.5 Recent developments in the availability of digital technology, along with emerging evidence of improved patient outcomes and cost-effectiveness of using digital woundimaging software, offers a new and exiting avenue for nurses to pursue within oncological

Wound management 491

• What is the patient’s general condition? • Is his/her general skin condition poor, fair or good? • Is the patient receiving/will receive any treatment likely to alter skin or mucosal condition, e.g. chemotherapy, radiotherapy or surgery?

• What is the meaning of the cancer and the significance of the wound for this individual? • How visible is the wound and its dressing? • What is the impact of the wound and dressing on daily life?

• What type of wound is it? • How long has it been present? • Was it caused by physical damage, mechanical damage or thermal damage? • What are the dimensions of the wound? • Do dressing changes/removal cause pain? • Is the dressing comfortable?

• Is the patient terminally ill? • What is the realistic goal of wound management?

• Where is the wound? • Is it in a skin fold or crease?

THE PATIENT

• Is it visible?

• Is complete healing possible?

• Does it affect mobility, nutrition, sleep, hygiene, oral hygiene?

• Is the patient malnourished? • How much weight has he/she lost as a result of the cancer? • Is the patient cachexic? • The significance of nutrition to wound healing is discussed below.

• Does the patient have any other conditions that may place him/her at greater risk of developing wounds or of delaying healing, e.g. diabetes, anaemia, immunocompromised status, infection, multiple drug regimens?

• How does the wound look? Is it deep or shallow, necrotic or sloughy? Is it infected and does it have an offensive odour? • Is there any exudate? Is this heavy, moderate or minimal? • What is the condition of the surrounding skin?

Figure 21.1 A framework for comprehensive assessment.

wound management.13 Along with skilled, technical knowledge, nurses must also be prepared to enter into a relationship with the patient, which engenders trust and a mutual respect (see Figure 21.1): Nursing is a metaphor for intimacy . . . Nurses do for others publicly what healthy persons do for themselves behind closed doors . . . [they] are there to hear secrets especially those born of vulnerability . . . and nurses

are indelibly identified with those terribly personal times.14

A detailed assessment of a person’s wound status includes, but may not be limited to, its location, size, colour, type of wound tissue, exudate, odour, wound margins, pain, dressing management, adjunctive therapies, the person’s interpretation of the cancer, the wound and associated disease stage.9 The rationale for wound dressing is shown in Figure 21.2.

492 The management of cancer-related problems • To minimise distress to the patient by hiding the wound from the gaze of others. • To restore or sustain maximum comfort. • To enhance an individual’s confidence to live as normal a life as possible. • To reduce pain by ¥ excluding air from ¥ nerve endings.

• To reduce the stigma of a malignant wound and to promote well-being.

• To protect the ¥ wound from ¥ friction.

• To reduce ¥ odour.

WOUND

• To protect the ¥ wound from ¥ dehydration ¥ and bacteria.

• To apply chemicals ¥ directly to the wound ¥ surface to aid cell ¥ lysis, loosen dead ¥ cells, or to enhance ¥ cell rejuvenation.

• To provide and ¥ sustain a moist ¥ environment. • To immobilise the wound and ¥ so prevent damage to the ¥ delicate collagen structures.

Figure 21.2

• To prevent the formation ¥ of haematoma or a ¥ hypertrophic scar.

Rationale for dressing a wound.8,10,11

Factors interfering with normal processes of wound healing in cancer Over the past few years, researchers have begun to define a multi-step process necessary to address complex or chronic wounds. The concept of wound bed preparation is gaining increasing

momentum amongst nurses as its offers a systematic approach (the TIME approach) to removing barriers to healing, including Tissue (non-viable), Infection or inflammation, Moisture imbalance and non-advancing or undermining Edges (TIME).9,15,16 The emerging view is that chronic or delayed-healing wounds are characterised by resident cells that have undergone phenotypic

Wound management 493

changes that need to be corrected for optimal healing to occur.17 With this understanding, the potential to revolutionise chronic wound management through the use of gene and stem cell therapies is being evaluated. In recent years, the use of maggots (larval therapy) appears to offer a safe and effective method of debriding tissue for wound bed preparation. Further research is needed to establish clinical utility and patient acceptability of their use.18,19 The ageing process is associated with reduced tissue elasticity, increased likelihood of systemic diseases, impaired immune and inflammatory responses, and generally impaired vascularity. Since cancer is recognised as being primarily a disease of old age, these factors are all likely to complicate wound healing. Impaired oxygen supply further compounds the healing process. Phagocytes cannot function effectively when oxygen availability is reduced, and as this deficit may arise as a consequence of inadequate lung and cardiovascular function, patients with primary lung cancer or secondary metastatic spread to the lungs may be highly susceptible to delayed wound healing. Chemotherapy commonly results in anaemia, further compromising oxygen availability. Nutritional status influences wound healing. Efficient wound healing is dependent on the availability of adequate energy, and yet cancer causes metabolic demands that greatly exceed energy of injury or stress, and the greater the impact on nutritional intake as a result of the demands of the tumour upon nutritional requirements and extent of catabolism.20 Any form of trauma, and particularly nutritional consequences for those who may have a diagnosis of cancer, results in a triggering of a hypothalamic chain of events that culminates in a physiological state known as catabolism, where plasma proteins are utilised to satisfy increased energy demands at a time when carbohydrate stores are depleted.21 Nutritional requirements for the woundhealing process include copper, iron, zinc, magnesium, the fat-soluble vitamins A and K, and the water-soluble vitamins B1, B5, and C.21 In cancer, the risk of malnutrition as a result of anorexia, nausea and vomiting, malabsorption, cachexia, anxiety, and depression, leading to increased metabolic rate or reduced intake, as well as

tumour-induced metabolic requirements, is great. Undernourishment delays wound healing owing to a reduction in collagen synthesis, while plasma proteins essential for effective wound healing may be utilised elsewhere to satisfy increased energy requirements.22 The protein demands for tissue repair are consequently unmet. The role of assessing patients’ nutritional status and needs for dietary supplements in promoting wound healing is of central importance. Most chemotherapeutic agents adversely affect dietary intake, often resulting in prolonged periods of reduced food intake. This can lead to weight loss, progressive disability, and malnutrition. Nausea and vomiting, diarrhoea, food aversion, and taste changes are but a few of the consequences of chemotherapy, which indirectly impact on wound healing. Similarly, radiotherapy directed at the gastrointestinal tract can result in severe nutritional deficiencies. Malabsorption and malnutrition may arise as a result, as well as severe nausea and vomiting, diarrhoea, and abdominal cramps.20 Early detection of potential wound infections is important. Signs of inflammation and discharge are commonly relied upon to alert us to potential problems. However, for the individual with cancer, such indicators may be of limited value if treatment has induced neutropenia, if steroids are being taken, or if tumour-related complications result in inadequate inflammatory response. Swelling, redness, and discharge may all be absent.17 An effective defence system is a critical component of effective wound healing, but for patients receiving a plethora of drugs and treatments that impact significantly upon immunological status and capacity for inflammatory response, the risk of infection and delayed wound healing is considerable. Steroids are especially potent inhibitors of inflammatory response to injury.17 Anticoagulants may cause haemorrhage and interfere with clot and scar formation. Chemotherapeutic agents and immunotherapies have the capacity to suppress immune response and to enhance vulnerability to viral and bacterial infection, as well as impairing clotting and healing.9 Varying degrees of tissue injury arising from radiotherapy can result in the development of an actual wound, which may become the focus for a local infection, or the site of a systemic infection.

494 The management of cancer-related problems

Fungating wounds Of all the lesions experienced by individuals with cancer, perhaps the most distressing for patients, relatives, and health professionals alike are fungating wounds. When malignant tumour cells infiltrate and erode through the skin a wound is said to be ‘fungating’.5 Breast cancer, melanoma, bladder, colon, kidney, ovary, uterus, stomach, head and neck, and lung cancers all have this potential. Fungating wounds often occur in locally advanced, metastatic, or recurrent disease, but this is not always the case. They are often characterised by malodorous exudate, whether serous or blood, which may seep out onto clothing, causing extreme distress.4 Fungating wounds may cause withdrawal from social activities, or daily life, as the persistent odour or heavily exudating wound necessitates frequent dressing changes.4,5 Addressing the psychological impact of a fungating wound, alongside highly skilled physical wound management, is of paramount importance. The aims of managing fungating wounds are to: • control tumour growth • prevent and halt surface bleeding • where possible, restore skin integrity.5 Treatment may include major therapeutic modalities such as chemotherapy, radiotherapy, surgery, hormone manipulation, or a combination of these. Local treatment includes haemostatic agents and topical metronidazole, along with systemic analgesics, antibiotics, or clotting factors as necessary.4,5 Currently available wound dressings are frequently inadequate for fungating wounds, and work is under way between nurse-researchers and industry to develop and evaluate dressings developed specifically to manage exudating, fungating wounds.5 Until such time as there are proven data to support the use of a dressing designed specifically for fungating wounds, dressings should be chosen following a consideration of problems identified during a thorough assessment. Irrespective of the nature of the wound being managed, the rationale for dressing it, the requirements of the wound, and the individual’s wishes

and expectations form the basis of the decisionmaking process. Meaningful assessment of outcomes of care, and evaluation of interventions employed can only be undertaken successfully following consideration of the processes described above. Once appropriate dressings are identified, planning how the wound can best be managed, in partnership with the person and their immediate carers, will offer a greater chance of mutual achievement of an agreed outcome. Together a plan can be drawn up of care where wound management is far more than simply a physical affair, reflecting an attempt to respect individuality and circumstance.

References 1. Murphy R.F. (1987). The Body Silent. London: WW Norton. 2. Goffman E. (1963). Stigma. Notes on the Management of Spoiled Identity. New York: Simon and Schuster. 3. Kleinman A. (1988). The Illness Narratives: Suffering, Healing and the Human Condition. New York: Basic Books. 4. Wilson V. (2005). Assessment and management of fungating wounds: a review. British Journal of Community Nursing, 10, S28–S34. 5. Grocott P. (2000). The palliative management of fungating malignant wounds. Journal of Wound Care 9, 4–9. 6. Gaut D. and Leininger M. (eds.) (1991). Caring: The Compassionate Healer. New York: National League for Nursing Press. 7. Wilkes L., White K., Smeal T. and Beale B. (2001). Malignant wound management: what dressings do nurse use? Journal of Wound Care 19, 65–69. 8. Thomas S. (1990). Wound Management and Dressings. London: Pharmaceutical Press. 9. Hess C.T. and Kirsner R. (2003). Uncover the latest techniques in wound bed preparation. Specific strategies, innovative products advance the healing process. Nursing Management 34, 54–56. 10. Miller M. (1994). Wound care. The ideal healing environment. Nursing Times 90, 62, 64, 66. 11. Quick A. (1994). Dressing choices. Nursing Times 90, 68. 12. Brunner L. and Suddarth D. (eds.) (1992). The Textbook of Adult Nursing. London: Chapman and Hall. 13. Santamaria N. and Clayton L. (2000). Cleaning up. The development of the Alfred/Medseed Wound Imaging System. Collegian 7, 14–15, 17–18.

Wound management 495 14. Fagin C. and Diers D. (1983). Nursing as metaphor. Occasional notes. New England Journal of Medicine 309, 116. 15. Dowsett C. and Ayello E. (2004). TIME principles of chronic wound bed preparation and treatment. British Journal of Nursing 13, S16–S23. 16. Fletcher J. (2003). The benefits of applying wound-bed preparation into practice. Journal of Wound Care 12, 347–349. 17. Falanga V. (2004). The chronic wound: impaired healing and solutions in the context of wound bed preparation. Blood Cells Molecular Diseases 32, 88– 94.

18. MacDougall K.M. and Rodgers F.R. (2004). A case study using larval therapy in the community setting. British Journal of Nursing 13, 255–260. 19. Fear M. (2004). The use of maggots as a new treatment in the community. Nursing Times 100, 48–50. 20. Holmes S. (1987). Malignant disease: nutritional implications of disease and treatment. Cancer and Metastasis Reviews 6, 357–381. 21. Hallett A. (1994). Vital ingredients. Nursing Times 90, 64, 66, 68. 22. Senter H. and Pringle A. (1985). How Wounds Heal: A Practical Guide for Nurses. Cheshire: Wellcome Foundation.

CHAPTER TWENTY-TWO

Lymphoedema Anne Williams

Introduction Lymphoedema is a chronic and often progressive condition, usually presenting as limb swelling but sometimes involving the trunk, genitalia, or head and neck. Insufficiency of the lymphatic system leads to an accumulation of fluid and proteins in the tissues and a subsequent chronic inflammatory condition, often complicated by skin changes and infection.1 Lymphoedema has a wide range of causes that may be cancer or non-cancer related. This chapter will focus on lymphoedema following cancer and will explore relevant pathophysiology, discuss lymphoedema incidence, and highlight the impact of lymphoedema on individuals. It will then outline treatment approaches, drawing on the developing evidence base within this relatively new speciality.

The lymphatic system The lymphatic system is a one-way drainage system that removes excess interstitial fluid, plasma proteins, cells, and debris from the tissues, returning it to the blood vascular system (see Figure 22.1). It plays an important role in maintaining fluid balance, has an immune function, and also transports fats and proteins.2

Box 22.1

The lymphatic system

A dense network of initial lymphatics (sometimes called lymph capillaries) is present in the superficial dermis of the skin and mucous membranes. These are blind-ended, with a single cell wall and are supported by elastic fibres and anchoring filaments which enable the vessels to open and close in response to changing tissue pressures. This allows fluid to enter the lymphatic system from the interstitial tissues. The initial lymphatics drain into precollector and larger collector vessels, consisting of contractile muscular segments, separated by valves. Lymph is propelled towards the deeper lymphatics by peristaltic-like movements of the collectors, passing through a series of lymph nodes before moving into increasingly larger lymphatic trunks that eventually drain into the venous system at the base of the neck. Around 700 lymph nodes are present in the body and act as filter stations, regulating the protein content of lymph and producing lymphocytes. Each collector drains a specific area of skin and the larger vessels also drain lymph from muscles, joints and deeper organs. Groups of collector lymphatics drain into specific regional lymph nodes. Where lymph nodes and/ or vessels have been damaged, collateral pathways in the initial lymphatics and pre-collectors provide opportunity for lymph to be redirected towards alternative regional nodes. The movement of lymph through the system depends on the intrinsic contractibility of lymphatics but is influenced by the muscle pump, the pulsation of blood vessels, gut motility and changes in intrathoracic and intra-abdominal pressures brought about by respiratory movements.3

Lymphoedema 497

1 7 2

3

4

5

6

Figure 22.1 Main lymph trunks and lymph node groups in the body. (1) Internal jugular lymph trunk; (2) supraclavicular lymph nodes; (3) axillary lymph nodes; (4) thoracic duct; (5) cisterna chyli; (6) inguinal lymph nodes; (7) right lymphatic duct.

498 The management of cancer-related problems

Lymphoedema and cancer

Lymphoedema prevention

Lymphoedema is associated with a variety of different cancers including breast, malignant melanoma, genitourinary malignancies, and sarcoma. Studies of breast cancer-related lymphoedema predominate in the literature (see Box 22.2). Clark et al.4 have reported a 21% incidence of breast cancer-related lymphoedema, with significant risk factors identified as mastectomy, hospital skin puncture and body mass index (BMI) >26.4 In this study, 80% of those with lymphoedema developed the problem in the first year following treatment. Previous research has highlighted the increased risk of lymphoedema following surgery and radiotherapy to the axilla.5 Approaches to managing the axilla have now changed, and more recently there is evidence that sentinel node biopsy reduces arm morbidity.6,7 The literature is limited, however, by the lack of standardisation in methods used for identifying and quantifying lymphoedema.8,9 It is clear, however, that as survival rates improve and many women also undergo long-term chemotherapy for invasive or metastatic disease, breast cancerrelated lymphoedema continues to be a significant problem. Serpell et al. described a 29% incidence of lymphoedema following inguinal node dissection in the management of invasive malignant melanoma.10 A 48% risk of temporary oedema in the 12 months post-treatment has also been reported in this group.11 Gynaecological cancers are also associated with lower limb lymphoedema.12,13 and Robinson et al. reported a 30% incidence of lymphoedema after treatment for soft tissue sarcoma of the lower limb or pelvis.14 Lymphoedema may develop many years after cancer treatment, and the International Society of Lymphologists recognises a latent, subclinical stage of lymphoedema.15 It is significant that a new-onset lymphoedema or worsening swelling may be indicative of recurrent cancer in patients who have been disease free. In patients with advanced cancer, problems such as tumour obstruction, immobility, cardiac, renal or hepatic failure will also exacerbate lymphoedema, with some drugs also producing additional fluid retention.

To date there is no good evidence to suggest that lymphoedema can be prevented, although there is specific advice that should be given to people at risk of lymphoedema, including: • avoid skin injury, scratches, insect bites and burns on or near the affected limb • avoid venepuncture, injections and having blood pressure taken on the affected limb • minimise any activities that exacerbate the lymphoedema such as standing for long periods if the leg is swollen or using the swollen arm to carry heavy bags.16 Further work is required to fully understand the factors that increase lymphoedema risk and evaluate the role of interventions that aim to prevent or reduce swelling, including the prophylactic use of compression hosiery and exercise.17 Todd and Topping have shown that there is a lack of consensus on written information on shoulder mobilisation provided for women following breast cancer, despite the fact that this may impact on rates of seroma formation and lymphoedema incidence.18 The need for health care professionals to communicate accurate information about lymphoedema to all patients at risk of lymphoedema has been clearly identified.19

Box 22.2 Recent studies of the pathogenesis of breast cancer-related lymphoedema The traditional view that lymphoedema is a direct result of lymph drainage failure due to lymph node removal is now being questioned. Pain et al. have shown that the risk of developing lymphoedema after breast cancer may be partly predetermined as a result of pre-operative differences in lymphatic function.20 Variations in lymphatic function have been identified in some groups,21 and may account for the uneven distribution of swelling in women with arm lymphoedema, where the arm is swollen but the hand is spared, for example. It is not clear how these findings relate to other types of cancer-related lymphoedema.

Lymphoedema 499

Diagnosis of lymphoedema Prompt diagnosis and treatment are important. Many breast cancer centres provide care for people with lymphoedema but there is evidence that lymphoedema services are often inadequate and unstructured, with significant numbers not receiving appropriate treatment.22 Lymphoedema is usually defined as swelling of >3 months’ duration that initially may be soft, pitting, and reduce on elevation.15,22 There are often characteristic changes in limb size and shape, with skin folds developing, particularly near joints. Eventually, the swelling may become fibrotic (hard) and will no longer ‘pit’ to finger pressure. Fibrosclerotic changes lead to a positive Stemmer’s sign, the inability to pinch up the thickened skin at the base of the second toe. This is a differential diagnostic sign for lower limb lymphoedema. Skin and tissue changes can also occur including dry skin, hyperkeratosis (scaly skin), increased fat deposition, and papillomatosis, a bulging cobblestone effect usually seen in lower limb swelling. Increased vulnerability to fungal and bacterial infections is common, and cellulitis has been identified in 29% of patients with lymphoedema.22 Diagnosis is usually made from the patient’s history, clinical examination and measurement. Investigations are not usually indicated in cancerrelated lymphoedema although magnetic resonance imaging, vascular studies, ultrasound or in vivo visualisation of lymphatic vessels using lymphoscintigraphy may be used to confirm diagnosis, assess cancer status, or exclude other pathology such as venous disease.

The impact of lymphoedema Lymphoedema is associated with a variety of problems that impact on quality of life including shock, fear, frustration, and negative body image.23 Franks et al. have highlighted the difficulties experienced by people with lower limb lymphoedema in terms of physical and social functioning and pain.24 A study of women with lower limb lymphoedema after treatment for gynaecological cancers identified the paucity of research in this

area and described particular problems with clothing and difficulties with daily activities such as housework, driving, and walking.25 Studies of women with breast cancer-related lymphoedema have clearly shown the psychological morbidity and altered sensations that can result in significant distress.26,27 Several authors have described the evaluation of quality-of-life tools in this group, highlighting the need for appropriate and clinically meaningful outcome measures to adequately assess the impact of lymphoedema.28,29 Additionally, issues relating to information seeking and coping with lymphoedema and, more specifically, the attitudes and comments of others, have been described.30,31 The psychological and psychiatric morbidity associated with lymphoedema should not be underestimated and health professionals have an important role in providing the long-term support and resources required by individuals with this chronic condition.

Treating lymphoedema Historically, the current approach to lymphoedema treatment originated in Austria and Germany in the 1970s and was introduced to the UK in the 1980s.32 Most of the early lymphoedema clinics were sited in cancer or palliative care units but, increasingly, primary care-based services are developing to address the wider need.33 Lymphoedema management combines meticulous skin care, isotonic exercises, manual lymphatic drainage massage, and compression therapy.32 Principally, this approach aims to optimise the function of the lymphatic system, reverse the changes taking place in the tissues, and prevent further deterioration. Treatment interventions are summarised in Table 22.1. Accurate diagnosis is crucial to identify the cause of swelling and a comprehensive assessment is necessary including medical history, clinical examination and measurement. Skill and flexibility are required to develop a treatment programme based on individual need, and practitioners need to work in partnership with patients to achieve realistic outcomes.

500 The management of cancer-related problems Table 22.1 Treatment interventions Intervention

Rationale

Skin care

To maintain skin integrity and minimise the risk of infection.

Compression therapy:39 • hosiery garments • multilayer bandaging • intermittent compression pumps (used with caution)

Exercise

Manual lymphatic drainage or simple lymphatic drainage32

Comments

• Daily washing and moisturising with a suitable emollient • Checking for signs of skin changes or damage • A wide range of standard and custom-made To prevent accumulation of fluid by hosiery is available raising interstitial pressure, • Garments should be fitted by experienced reducing capillary filtration and practitioners encouraging fluid to move towards • Multilayer bandaging consists of stockinette the root of the limb. layer, padding and layers of short stretch bandages, with a digit bandage • This provides a variation in pressure peaks of sub-bandage pressures to enable oedema reduction • Exercise is individualised depending on ability To enhance lymph flow without and lifestyle increasing capillary filtration, • Activities such as walking and swimming are improve the muscle pump action encouraged and reduce musculoskeletal • Breathing techniques are also used problems. • The effect may be improved by wearing hosiery or bandages • Manual lymphatic drainage (MLD) is a gentle To redirect the lymph along the but very specific massage superficial and deeper lymphatics, from the swollen, congested areas • Treatment includes the neck, trunk and limb towards healthy lymphatics (often • The movements enhance the contraction of lymphatics through collateral pathways). • Practitioners should be qualified in the Vodder, Földi, Casley Smith or Leduc methods of MLD in order to treat lymphoedema • Simple lymphatic drainage (SLD) is a simplified version of MLD designed for use by patients • Appropriate teaching in SLD is required for this to be successful

Many patients with cancer-related lymphoedema present with mild, relatively uncomplicated swelling, requiring support with self-management practices. This is referred to as maintenance treatment and may include daily skin care, exercises, simple lymphatic drainage (a type of self-massage), and wearing of compression hosiery garments. Those with more severe lymphoedema require intensive treatment to reduce limb volume and improve shape and skin condition.32 This usually consists of a 2–4-week course of daily manual lymphatic drainage massage and

multilayer bandaging, and is sometimes referred to as decongestive lymphatic therapy (DLT) or complex decongestive therapy (CDT). Self-management of lymphoedema within the maintenance phase requires motivation and perseverance and patients often have to make a number of lifestyle adjustments. A telephone survey of patients with stable lymphoedema explored long-term compliance with treatment and highlighted their experiences of adaptation and self-management,34 reflected in the following comments:

Lymphoedema 501 I have to get up nearly an hour earlier in the morning to allow time to put my stockings on after doing the massage and exercises. I can’t be spontaneous as I have to fit in my selfmanagement routine every day, even on holiday. I miss walking in bare feet. I no longer go on holiday to hot climates for fear of getting an infection again.

Surgery, once the mainstay of treatment for lymphoedema in the UK, is rarely used now and the use of diuretics is discouraged as these do not address the functional changes within the lymphatic system and are only indicated if there are concurrent problems such as cardiac failure. Intermittent compression pumps are also used with extreme caution, particularly in cancer-related lymphoedema following lymphadenectomy. While these may push fluid to the root of the limb, leading to fibrosis in this area, they also increase the risk of genital oedema.35

One study that examined the effects of selfmanagement techniques including gentle arm exercise and deep breathing, reported a statistically significant reduction in limb volume and symptoms such as arm heaviness and tightness.44 There is also a growing body of literature encouraging the use of active exercise programmes in women with breast cancer-related lymphoedema and challenging previous beliefs that people with lymphoedema should avoid all strenuous activities.17,45 There is substantial scope for further research into lymphoedema. Currently there is much expertise amongst practitioners and patients, however, and this is reflected in the development of a number of consensus documents. The British Lymphology Society and Lymphoedema Support Network, a patient-run organisation, have produced guidelines on the management of cellulitis in lymphoedema.46 Substantial work is also being undertaken by the Lymphoedema Framework Project in the development of best practice guidelines for lymphoedema.33

Evidence base Summary A Cochrane review of physical therapies for lymphoedema has highlighted the limited evidence base for lymphoedema treatment.36 Studies of DLT provide some insight into expected treatment outcome,37,38 although methods used to measure limb volume are not consistent and results are often not comparable, providing little scope for meta-analysis at present. Improvements in quality of life following treatment have been reported by several authors particularly in terms of physical mobility, function, and reduction in pain.24,28 Several studies have examined the efficacy of specific interventions. Badger et al. demonstrated that a period of multilayer bandaging followed by elastic compression hosiery was more effective at reducing excess limb volume and providing longterm control of lymphoedema, than hosiery alone.39 Manual lymphatic drainage for breast cancer-related lymphoedema has also been evaluated.40,41 and although results are not fully conclusive,42 and patient samples are small, there is evidence to support its use, particularly at an early stage when lymphoedema is relatively mild.43

Cancer-related lymphoedema is a significant problem for some patients and may lead to longterm difficulties in patients who are otherwise disease-free. Appropriate and comprehensive treatments can do much to improve quality of life. Health care professionals need to be able to identify lymphoedema in its early stages, provide information for those at risk of the problem, and be aware of local services for treatment and referral. Substantial expertise exists relating to lymphoedema and its management and the evidence base is gradually developing. The future development of multi-centre trials will address important clinical questions and provide exciting challenges for lymphoedema practitioners, patients and researchers.

References 1. Stanton A. (2000). How does tissue swelling occur? The physiology and pathophysiology of interstitial fluid formation. In Twycross R., Jenns K. and Todd J. (eds.).

502 The management of cancer-related problems Lymphoedema. Oxford: Radcliffe Medical Press, pp. 11–21. 2. Földi M. and Földi E. (2003). Physiology and pathophysiology of the lymphatic system. In Földi M., Földi E. and Kubik S. (eds.) Textbook of Lymphology for Physicians and Lymphedema Therapists. Munich and Jena: Urban and Fischer, Elsevier. 3. Vaqas B. and Ryan T.J. (2003). Lymphoedema: pathophysiology and management in resource-poor settingsrelevance for lymphatic filariasis control programmes. Filaria Journal 2, 4. www.filariajournal.com/content/2/ 1/4 (accessed 7 August 2007). 4. Clark B., Sitzia J. and Harlow W. (2005). Incidence and risk of arm oedema following treatment for breast cancer: a three year follow-up study. Quarterly Journal of Medicine 98, 343–348. 5. Kissin M.W., Querci della Rovera G., Easton D. and Westbury G. (1986). Risk of lymphoedema following the treatment of breast cancer. British Journal of Surgery 73, 580–584. 6. Golshan M., Martin W.J. and Dowlatshahi K. (2003). Sentinel lymph node biopsy lowers the rate of lymphedema when compared with standard axillary lymph node dissection. American Surgeon 69, 209–211. 7. Mansel R.E., Fallowfield L., Kissin M. et al. (2006) Randomized multicentre trial of sentinel node biopsy versus standard axillary treatment in operable breast cancer: the ALMANAC Trial. Journal of the National Cancer Institute 98, 599–609. 8. Williams A.F., Franks P.J. and Moffatt C.J. (2005). Lymphoedema: estimating the size of the problem. Palliative Medicine 1, 300–313. 9. Armer J.M. and Stewart B.R. (2005). A comparison of four diagnostic criteria for lymphedema in a post-breast cancer population. Lymphatic Research and Biology 3, 208–217. 10. Serpell J.W., Carne P.W. and Bailey M. (2003). Radical lymph node dissection for melanoma. Australian and New Zealand Journal of Obstetrics and Gynaecology 73, 294–299. 11. Wrone D.A., Tanabe K.K., Cosimi A.B. et al. (2000). Lymphedema after sentinel lymph node biopsy for cutaneous melanoma: a report of 5 cases. Archives of Dermatology 136, 511–514. 12. Nesvold I.L. and Fossa S.D. (2002). Lymphedema after surgical treatment of cervical and vulvar cancer: routines and needs before discharge. Tidsskrift for den Norske Loegeforen 122, 2531–2533. 13. Ryan M., Stainton M.C., Slaytor E.K. et al. (2003). Aetiology and prevalence of lower limb lymphoedema following treatment for gynaecological cancer. Australian and New Zealand Journal of Obstetrics and Gynaecology 43, 148–151.

14. Robinson M.H., Spruce L., Eeles R. et al. (1991. Limb function following conservation treatment of adult soft tissue sarcoma. European Journal of Cancer 27, 1567– 1574. 15. International Society of Lymphology. (2003). The Diagnosis and Treatment of Peripheral Lymphedema. Consensus Document of the International Society of Lymphology. Lymphology 36, 84–91. 16. Lymphoedema Support Network. (2006). Preventative Advice for Patients at Risk of Developing Lymphoedema of the Leg(s). LSN Factsheet, London: Lymphoedema Support Network. 17. Lane K., Worsley D. and McKenzie D. (2005). Exercise and the lymphatic system: implications for breast-cancer survivors. Sports Medicine 35, 461–471. 18. Todd J. and Topping A. (2005). A survey of written information on the use of post-operative exercises after breast cancer surgery. Physiotherapy 91, 87–93. 19. Ridner S.H. (2006). Pretreatment lymphedema education and identified educational resources in breast cancer patients. Patient Education and Counselling 61, 72–79. 20. Pain S.J., Purushotham A.D., Barber R.W. et al. (2004). Variation in lymphatic function may predispose to development of breast cancer-related lymphoedema. European Journal of Surgical Oncology 30, 508–514. 21. Stanton A.W., Modi S., Mellor R.H. et al. (2006). A quantitative lymphoscintigraphic evaluation of lymphatic function in the swollen hands of women with lymphoedema following breast cancer treatment. Clinical Science 110, 553–561. 22. Moffatt C.J., Franks P.J., Doherty D.C. et al. (2003). Lymphoedema: an underestimated health problem. Quarterly Journal of Medicine 96, 731–738. 23. Morgan P.A., Franks P.J. and Moffatt C.J. (2005). Health-related quality of life with lymphoedema: a review of the literature. International Wound Journal 2, 47–62. 24. Franks P.J., Moffatt C.J., Doherty D.C. et al. (2006). Assessment of health-related quality of life in patients with lymphedema of the lower limb. Wound Repair and Regeneration 14, 110–118. 25. Ryan M., Stainton M.C., Jaconelli C. et al. (2003). The experience of lower limb lymphoedema for women after treatment for gynaecologic cancer. Oncology Nursing Forum 30, 417–423. 26. Tobin M.B., Lacey H.J., Meyer L. and Mortimer P.S. (1993). The psychological morbidity of breast-cancerrelated swelling. Cancer 72, 3248–3252. 27. Woods M. (1993). Patients’ perceptions of breast cancerrelated lymphoedema. European Journal of Cancer Care 2, 125–128. 28. Sitzia J. and Sobrido L. (1997). Measurement of healthrelated quality of life patients receiving conservative

Lymphoedema 503 treatment for limb lymphoedema using the Nottingham Health Profile. Quality of Life Research 6, 373–384. 29. Coster S., Poole K. and Fallowfield L.J. (2001). The validation of a quality of life scale to assess the impact of arm morbidity in breast cancer patients post-operatively. Breast Cancer Research and Treatment 68, 273–282. 30. Johansson K., Homstrom H., Nilsson I. et al. (2003). Breast cancer patients’ experiences of lymphoedema. Scandinavian Journal of Caring Sciences 17, 35–42. 31. Williams A.F., Moffatt C.J. and Franks P.J. (2004). A phenomenological study of the lived experiences of people with lymphoedema. International Journal of Palliative Nursing 10, 279–286. 32. Foldi E., Foldi M. and Weissleder H. (1985). Conservative treatment of lymphoedema of the limbs. Angiology 36, 171–180. 33. Morgan P. and Moffatt C. (2006). The National Lymphoedema Framework Project. British Journal of Community Nursing, The Lymphoedema Supplement 11(suppl. 4), S19–S22. 34. Rose K.E., Taylor H.M. and Twycross R.G. (1991). Long-term compliance with treatment in obstructive arm lymphoedema in cancer. Palliative Medicine 5, 52–55. 35. Boris M., Weindorf S. and Lasinski B.B. (1998). The risk of genital edema after external pump compression for lower limb lymphedema. Lymphology 31, 15–20. 36. Badger C., Preston N., Seers K. and Mortimer P. (2004). Physical therapies for reducing and controlling lymphoedema of the limbs (Cochrane Review). The Cochrane Library, Issue 3. Oxford: Update Software. 37. Ko D.S., Lerner R., Klose G. et al. (1998). Effective treatment of lymphoedema of the extremities. Archives of Surgery 133, 452–458. 38. Szuba A., Strauss W., Sirsikar S.P. et al. (2002) Quantitative radionuclide lymphoscintigraphy predicts outcome of manual lymphatic therapy in breast cancer-related

lymphedema of the upper extremity. Nuclear Medicine Communications 23, 1171–1175. 39. Badger C.M.A., Peacock J.L. and Mortimer P.S. (2000). A randomised, controlled, parallel-group clinical trial comparing multilayer bandaging followed by hosiery versus hosiery alone in the treatment of patients with lymphoedema of the limb. Cancer 88, 2832– 2837. 40. Williams A.F., Vadgama A., Franks P.J. and Mortimer P.S. (2002). A randomized controlled crossover study of manual lymphatic drainage therapy in women with breast cancer-related lymphoedema. European Journal of Cancer Care 11, 254–261. 41. Johansson K., Albertsson M., Ingvar C. et al. (1999). Effects of compression bandaging with or without manual lymph drainage treatment in patients with post-operative arm lymphedema. Lymphology 32, 103–110. 42. Andersen L., Højris I., Erlandsen M. et al. (2000). Treatment of breast-cancer-related lymphedema with or without manual lymphatic drainage. A randomised study. Acta Oncologica 39, 399–405. 43. McNeely M.L., Magee D.J., Lees A.W. et al. (2004). The addition of manual lymph drainage to compression therapy for breast cancer related lymphedema: a randomized controlled trial. Breast Cancer Research and Treatment 86, 95–106. 44. Moseley A.L., Piller N.B. and Carati C.J. (2005). The effect of gentle arm exercise and deep breathing on secondary arm lymphedema. Lymphology 38, 136–145. 45. Ahmed R.L., Thomas W., Yee D. and Schmitz K.H. (2006). Randomized controlled trial of weight training and lymphedema in breast cancer survivors. Journal of Clinical Oncology 24, 2765–2772. 46. British Lymphology Society. (2006). Consensus Document on the Management of Cellulitis in Lymphoedema. Sevenoaks: British Lymphology Society.

CHAPTER TWENTY-THREE

Malignant ascites Nancy Preston

Management of malignant ascites results in 6% of hospice admissions and can affect up to 40% of patients with metastatic peritoneal deposits.1 Ascites is a collection of fluid in the peritoneal space which may develop as a result of malignancy. The primary cancer sites where malignant ascites is most common are the ovary, breast, colon, stomach, and pancreas. Any tumour with metastatic peritoneal deposits may result in the development of ascites.

Common symptoms As fluid accumulates the abdomen becomes distended, giving rise to a range of symptoms including: • • • • • • • • • • •

indigestion loss of appetite altered bowel habit abdominal discomfort abdominal distension changes in body image disruption in daily activities and lifestyle nausea and vomiting ankle oedema fatigue shortness of breath.

Individually, each symptom can be managed. Indigestion can be treated with regular antacids or

even systemic H2 antagonists. If this is controlled, appetite might be improved but the ascites squashes the stomach, hence satiety is easily reached. Laxatives can help to maintain soft stool, and mild pain killers might be needed for abdominal discomfort. A new wardrobe of clothes may be required as the waistline can increase considerably with ascites. With the change in size, patients’ body image may alter. For some, this is not seen as a problem as their lives are predominantly based within the home, but for others this may have far-reaching effects upon femininity and sexuality. As the ascites increases so do the symptoms and this can mean becoming increasingly limited in what is manageable at home. Fatigue and breathlessness are an increasing consequence of the ascites, and the only way to resolve these problems is to remove the fluid.

Pathophysiology Ascites is a type of oedema. Malignant ascites is an umbrella term, which denotes ascites arising from a malignancy. The causes of malignant ascites are quite distinct from the causes of nonmalignant ascites that may result, for example, from cirrhosis of the liver or heart failure. Malignant ascites has been classified into four types: central, peripheral, mixed and other (see Table 23.1).2 A central ascites results from pressure from liver metastases forcing fluid out of the general

Malignant ascites 505 Table 23.1 Types of malignant ascites Classification

Proportion (%)

Definitions

Central ascites

15

Peripheral ascites

50

Mixed ascites Remaining ascites

15 20

Massive hepatic metastases causing fluid to be forced out of the venous system – transudate (low in protein) Lymphatic obstruction coupled with increased permeability of the peritoneal capillaries – exudates (high in protein) Mixture of the above causes Chylous ascites, or unknown cause

circulation. There may also be some disruption in the rennin–angiotension–aldosterone system. This ascites is usually a transudate with a low protein content. Peripheral ascites is the most common form and is usually an exudate, with a high protein content. This arises due to two main causes: increased permeability of the peritoneal capillaries, and lymphatic obstruction. Increased permeability of the peritoneal capillaries results in excess fluid production. This has limited exit routes due to the obstruction of lymphatic vessels draining the peritoneal cavity by tumour cells.3 Flow rates from the peritoneal cavity are about a quarter the rate of people without a malignancy.4 It is important to know which type of ascites is being managed, to choose the appropriate treatment.

Managing ascites Treatment for ascites can either be palliative or anti-cancer. There are few well-conducted studies to base treatment upon. Decisions need to be made from the best evidence available, clinical opinion, and being guided by pathophysiology. Anti-cancer treatments

The aim of anti-cancer treatment is to remove the tumour, thereby reducing the ascites. A number of experimental drugs have been used against ascites. Most of these are biological therapies which are expensive and involve frequent hospital stays. Only tumour necrosis factor has been evaluated in a randomised controlled trial (RCT).5 Although in early studies it had looked hopeful, in the RCT it was shown to have no effect.

Palliative treatments

Systematic reviews have identified few trials of the main palliative treatments, namely drainage and diuretic therapy.6 Two surveys in the UK6 and Canada7 found that drainage or paracentesis is used in 98% of centres. However, in Canada paracentesis was seen as effective by 78% of physicians; in the UK only 44% felt this. Diuretic therapy was seen as preferable by 62% of physicians in the UK. Paracentesis Anyone with cancer presenting with abdominal distension thought to be due to malignant ascites needs to have this diagnosis confirmed. This is done through cytology, where fluid removed at drainage is examined for malignant cells. Ascites can result from other medical conditions, hence it is imperative to demonstrate that the ascites has occurred due to malignancy. Any drainage of the peritoneal cavity has the risk of bowel perforation. As fluid builds up, so the bowel can float upwards. Insertion of any drainage tube should be carried out with ultrasound guidance, so that the largest area of fluid can be identified and marked for drainage.8 Drainage is carried out under local anaesthetic and can be uncomfortable. Further, paracentesis, although offering relief from symptoms, is only temporary and the fluid will re-accumulate. Repeated drainage may result in protein depletion, hypotension, and infection.9 Many people who have intractable ascites spend their preterminal and terminal days requiring frequent hospital admissions for drainage.10 Interviews with women with ascites undergoing drainage of their ascites with a suprapubic catheter showed that they welcomed drainage due to the relief it brought, and

506 The management of cancer-related problems

minimal discomfort.6 The experience of discomfort changed when a peritoneal drainage catheter was used, with some women refusing the procedure due to pain during the procedure but particularly afterwards. However, there are no well-conducted studies evaluating paracentesis. In an attempt to reduce hospital admissions, a protocol has been evaluated in which a catheter is left in the abdomen to allow continuous drainage. The catheter is tunnelled under the skin and sutured into place. The exit site is cared for as a stoma, with the fluid collected in a catheter bag. A number of studies have been carried out following people with indwelling drains, but none were RCTs. In a number of cases there were problems with peritonitis and the need to resite the catheter. Without a comparison it is unclear how much more beneficial this approach is. In one trial, 16 out of 40 people approached declined the continuous drainage catheter saying they would prefer weekly drainage.11 Overall repeated paracentesis seems to be acceptable to most people. Diuretic therapy Consensus as to the use of diuretic therapy has yet to be achieved. Discrepancies may be due to differences in prescribed diuretic dosages and/or the type of ascites being treated – central or peripheral ascites. There have been no published randomised studies to evaluate the role of diuretics in managing malignant ascites. Diuretics such as spironolactone compete with aldosterone for receptors on the proximal tubule of the kidney, inhibiting the effect of aldosterone. In one study success was measured by a weight loss of 0.5 kg per day.12 This was achieved in 13 out of 16 cases. However, a similar study, which also measured weight loss, assessed whether fluid had moved out of the peritoneal cavity.13 In this study they found weight loss was associated with fluid movement in central ascites but not peripheral ascites. They felt that the weight loss was due to dehydration in peripheral ascites, and was thus dangerous and not recommended. Peritoneovenous shunts Peritoneovenous shunts were developed for use with intractable ascites as a result of cirrhosis of

the liver. This method involves implanting a catheter under the skin running from the peritoneal cavity back into the general circulation, usually via the superior vena cava or right atrium. The two sections are connected by a one-way valve allowing fluid to move in one direction only. Fluid moves upwards owing to changes in intrathoracic and intraperitoneal pressure achieved through normal breathing. A pressure of 3 cm of water is required to open the valve.14 Patients are asked to wear abdominal binders and to carry out breathing regimes, where they breathe against a pressure for 15 minutes, four times a day, in order to maximise the pressure changes. Peritoneovenous shunts are physiologically based in that they avoid problems of protein depletion. There are two main types of shunt: LeVeen and Denver. Both have been involved in clinical studies with patients with malignant ascites but neither has proved superior. They differ in that the Denver shunt has a valve that can be massaged each day to increase the flow and to push through debris in the catheter that may otherwise occlude it. Both are usually inserted under local anaesthetic and a review of the literature of studies using shunts shows variable success rates.6 However, these studies are poorly conducted and rarely define what they mean by successful. Further, they are associated with a number of deaths. Other complications include overload, thrombosis, infection, bleeding, and respiratory distress. Fewer studies seem to be conducted, perhaps showing it is becoming less well used and less appropriate for palliative care. Summary of treatments

Many strategies have been tested for controlling malignant ascites. Unfortunately, there has been little formal assessment undertaken to examine what individuals with ascites themselves feel about these various treatments. Only the good acceptance of women undergoing paracentesis using a suprapubic catheter has been demonstrated. Personal accounts 23.1 and 23.2 of two women with ascites demonstrate that the way in which individuals interpret the problem is crucial to how they choose to have their symptom managed. For the majority, malignant ascites occurs at a time when emphasis should be upon

Malignant ascites 507

minimal intervention and enabling patients to remain as free of hospital admissions and invasive procedures as possible. Evaluation of all methods currently employed, incorporating the perception of outcome from patients, doctors, and nurses, is required. A novel nursing approach to ascites management through breathing exercises and abdominal binding has been conducted to increase the time between drainage.6 However, too few people were entered and the approach needs further evaluation, although early results were promising.

The experience of ascites A great deal has been written about the various treatments for malignant ascites, although there is no consensus of opinion as to the optimal treatment. Few studies have formally asked people about their experience of ascites, or their views on the treatments offered to them. What is apparent from talking to women with ascites is that they have very different experiences. They interpret their ascites according to the meanings they attach to it and its relationship to their prognosis. Meaning will be dependent upon an individual’s own perceptions, which in turn will be influenced by culture, society, and environment. It is possible that ascites was wrongly construed as pregnancy in the past, as implied by Jane Rogers in Mr Wroe’s Virgins,15 a story set in the early part of the 19th century. The story describes a religious group built up around the teachings and prophecy of Mother Southcote. At the age of 60 she appeared to be pregnant and died during childbirth: For she was sixty years of age, unmarried, and had never known a man. Yet she was with child . . . When the time for the child’s birth came and passed with no sign of deliverance, her suffering heart broke, letting the captive spirit escape from earthly trials . . . The child born of Mother Southcote was a spirit.

The explanation for her pregnancy may have been malignant ascites as a result of cancer. The pains she suffered could have been those associated with bowel obstruction. When an individual is left without adequate explanation for her ascites, she may believe that the distended abdomen is

caused by the presence of tumour. She may fear that the pressure is damaging her organs and it will undoubtedly serve as a daily reminder of the disease. This is illustrated by Jenny’s experience in Personal account 23.1. A contrasting experience is offered in Personal account 23.2. Personal account 23.1 Jenny is 43. Having been diagnosed for a year with ovarian cancer, Jenny’s disease relapsed after first-line therapy. She was prescribed a taxane but continued to be troubled with recurrent ascites. Her appearance was very important to her: Jenny liked to look glamorous. Her husband also dressed well, and they enjoyed an active social life. Jenny would come into hospital for drainage, when she felt her ascites was gross, when clothes looked awful, and she could no longer cope with the distress caused by her condition. She also associated her ascites with the fear that her chemotherapy was not working. Her ascites was an outward manifestation of the danger her disease posed. Jenny found it very hard to accept that the fluid was not causing her any physical harm, because the feelings she experienced were so great. She would frequently request the fluid to be drained, often when there was insufficient fluid to remove. Her self-image was crucial to maintaining her sense of normality. Her appearance was paramount; it represented the woman she was before becoming a cancer patient. The ascites disrupted this self-image, forcing an unwelcome and painful redefinition of self.

Results from the interview study with women with ascites found the experience to be very difficult.6 Few women understood what ascites was and most did not know it was connected to their cancer. Some believed it was urine, chemotherapy build-up, and a side-effect of trial drugs. The impact of the ascites was negative, with about a quarter saying it was the worst part of their cancer journey. All symptoms improved after drainage, except emotional discomfort. Perhaps this related to women’s realisation that their cancer was not going to be cured and the ascites was an outward manifestation of their cancer’s ongoing growth. As the ascites made the cancer visible it was harder to ignore. Some spoke of the associations with pregnancy, with one woman being asked by a work colleague when her baby was due.

508 The management of cancer-related problems

Personal account 23.2 Elizabeth had a different experience of ascites. She was 73, and thought of herself as a survivor, having lived through the war and had seven children. When diagnosed with cancer she thought ‘that was it’ and was amazed that the hospital could offer any treatment. Everything from then on was a bonus: ‘living on borrowed time’. Friends constantly visited her at home; although she rarely left home, she didn’t feel embarrassed about her appearance. She thought it funny that people might think ‘How can that old girl be pregnant?’. She rarely complained of sideeffects even though she was often unwell from her treatment. Her ascites accumulated every 2 weeks, but this did not appear to be a problem for her. She would telephone the ward after 2 weeks telling staff she felt ‘a bit uncomfortable’. She would have 10–13 litres of fluid drained. Elizabeth’s expectations were markedly different from Jenny’s as she saw the ascites as simply an inevitable consequence of her cancer.

References 1. Reynard C. and Mannix K. (1989). Management of ascites in advanced cancer – a flow diagram. Palliative Medicine 4, 45–47. 2. Runyon B.A., Hoefs, J.C. and Morgan, T.R. (1988). Ascitic fluid analysis in malignancy-related ascites. Hepatology 8, 1104–1109. 3. Feldman G.B. (1975). Lymphatic obstruction in carcinomatous ascites. Cancer Research 35, 325–332. 4. Bronskill M.J., Bush R.S. and Ege G.N. (1977). A quantitative measurement of peritoneal drainage in malignant ascites. Cancer 40, 2375–2380. 5. Hirte H.W., Miller D., Tonkin K. et al. (1997). A randomized trial of paracentesis plus intraperitoneal tumor

necrosis factor-alpha versus paracentesis alone in patients with symptomatic ascites from recurrent ovarian carcinoma. Gynecology Oncology 64, 80–87. 6. Preston N. (2004). The Development of a Nursing Therapy for the Management of Malignant Ascites. PhD thesis, University of London. 7. Johnson I.S., Rogers C., Biswas B. and Ahmedzai S. (1990). What do hospices do? A survey of hospices in the United Kingdom and Republic of Ireland. British Medical Journal 300, 791–793. 8. Ross G.J., Kessler H.B., Clai M.R. et al. (1989). Sonographically guided paracentesis for palliation of symptomatic malignant ascites. American Journal of Roentgenology 153, 1309–1311. 9. Kehoe K.C. (1991). Malignant ascites: etiology, diagnosis and treatment. Oncology Nursing Forum 18, 523– 530. 10. Belfort M.A., Stevens P.J., DeHaek K., Soeters R. and Krige J.E. (1990). A new approach to the management of malignant ascites; a permanently implanted abdominal drain. European Journal of Surgical Oncology 16, 47– 53. 11. Young D.S., Lentz S.S., Barrett R.J., Homesley H.D. and Moore J.S. (1992). Outpatient management of malignant ascites using ultrasound, a trocar, and a Tenckhoff catheter. International Journal Gynecological Cancer 2, 175–178. 12. Greenway B., Johnson P.J. and Williams R. (1982). Control of malignant ascites with spironolactone. British Journal of Surgery 69, 441–442. 13. Pockros P.J., Esrason K.T., Nguyen C., Duque J. and Woods S. (1992). Mobilization of malignant ascites with diuretics is dependent on ascitic fluid characteristics. Gastroenterology 103, 1302–1306. 14. LeVeen H.H., Christoudias G., Ip M. et al. (1974). Peritoneovenous shunting for ascites. Annals of Surgery 180, 580–591. 15. Rogers J. (1991). Mr Wroe’s Virgins. London: Faber and Faber.

CHAPTER TWENTY-FOUR

Bone marrow suppression: neutropenia and thrombocytopenia Ruth Dunleavey

Introduction Bone marrow suppression (BMS) is a reduction in the formation of red and white blood cells and platelets in the bone marrow. In cancer, BMS may be secondary to the disease process or may result from the therapy used to treat it. It is a particular problem amongst people undergoing chemotherapy. Cytotoxic drugs arrest the multiplication of malignant cells by interfering with the process of cell division. Because most chemotherapy lacks the specificity to target cancer cells alone, cytotoxic drugs also interfere with cell division amongst healthy groups of cells. Cells that are rapidly dividing, such as blood cells, are particularly vulnerable. Blood cells are made in the bone marrow which is found inside the long bones of the body and in the sternum, pelvis, and skull. They originate from a ‘great, great-grandfather’ cell known as the pluripotent stem cell (see Figure 24.1).1 Pluripotent stem cells have the unique capacity to produce daughter cells that either mature into further stem cells or differentiate into specific types of blood cell. A normal white blood count is 4–10 × 109/l. Neutrophils make up approximately 40–60% of this. Neutrophils have a very short life span, living for only 7–8 hours in peripheral blood.2 Neutropenia is usually graded by the National Cancer Institute (NCI) system (see Table 24.1).3 The depth and duration of neutropenia has been demonstrated to bear a very close correlation with the acquisition of infection, the majority of severe infections occur-

ring when the neutrophil count falls below 0.1 × 109/l.4 People receiving chemotherapy are considered to be at greatest risk of becoming neutropenic following their first cycle of treatment.5,6 The normal range for platelets is 150–400 × 109/l and thrombocytopenia occurs when the level falls below this. Thrombocytopenia is also graded by the NCI system (see Table 24.1).3 The rest of this chapter examines some of the key clinical issues in the care of neutropenic and thrombocytopenic patients, with particular emphasis on the care of patients with haematological malignancies. It begins with a discussion of febrile neutropenia followed by an evaluation of two strategies aimed at the prevention of infection amongst the neutropenic patient – namely the neutropenic diet and protective isolation. Care of the neutropenic patient is then discussed in the context of current health care trends such as early discharge from hospital and outpatient care of oncology patients. Finally there is an exploration of some of the issues involved in caring for the patient with thrombocytopenia.

Neutropenia and the cancer patient . . . considering neutropenia exclusively as the numerical value of the absolute neutrophil count limits its conceptualizations to physiologically related aspects, minimizes its complexities and neglects dimensions of human response and the patient experience.7

510 The management of cancer-related problems Pluripotent stem cell

CFUGEMM Mixed myeloid progenitor cell

Lymphoid stem cell CFUbaso

BFUE

CFUGMEo

Erythroid progenitors CFUMeg Megakaryocyte progenitor

CFUE

CFU-M

CFUGM Granulocyte monocyte progenitor

CFUEo Eosinophil progenitor

Thymus

CFU-G

B Red cells

Platelets

Monocytes

Neutrophils

Eosinophils

Basophils

T

Lymphocytes

Figure 24.1 Blood cell formation (haemopoiesis). Diagrammatic representation of the bone marrow pluripotent stem cell and the cell lines that arise from it. Various progenitor cells can now be identified by culture in a semi-solid medium by the type of colony they form. Baso, basophil; BFUE, burst-forming unit; CFU, colony-forming unit; E, erythroid; Eo, eosinophil; GEMM, mixed granulocyte, erythroid, monocyte, megakaryocyte; G, granulocyte; M, monocyte; Meg, megakaryocyte. Reproduced with the permission of Blackwell Scientific Publications from Hoftbrand A.V. and Pettit J.E. (1993). Essential Haematology, 3rd edition.1

Table 24.1 National Cancer Institute neutropenia grading4 Grade

Neutrophils (¥109/l)

Platelets (¥109/l)

1 2 3 4

≥1.5 to < 2.0 ≥1.0 to